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

Scoliosis Journey & Pics - Week 15

Almost 5 months post-op. Finally getting to the point I am counting in months lol! I am only posting these pictures for people who are really considering surgery, know someone else who is/has, and my family and friends who genuinely want to know what it looks like. They said everyone loses 10-15 pounds after surgery. I had luckily managed to avoid weight loss up until the beginning of May and thought it wouldn't happen to me. I fell in our living room on our wood floors and it set me back a lot. It could have been worse. I am very lucky I didn't need another surgery or adjustment.

The pain is still pretty intense. It never stops. There is literally not a moment in the day that I am not in pain. I am SO uncomfortable regardless of how I sit, lay, recline, etc. I am feeling a significant improvement and I am getting stronger, it's just a slow process. I know that this was the right decision. Even though there are some moments when I wish I could just make it go away and go back to the way it was, I know that's unrealistic. I couldn't have continued to live in constant pain knowing it was only getting worse and that I was postponing the inevitable. I am approaching a half a year post operative and a lot has changed from the day I came home until now. Yes, I have torn many muscles. I have had three rounds of painful trigger point injections into my torn muscles. Physical therapy is exhausting and feels like something babies do in Gymboree, but I can almost brush my teeth without using my hand to hold myself up over the sink.   

Being a couple inches taller makes me look even thinner. You can see the instrumentation when you look at my back, but that will go away as I gain more weight and my muscles grow back. The pictures below this are from week 15 after surgery.

All things considered, I am very lucky. Listen to your surgeon and physical therapists advice, don't over-do it and vacuum, clean your bathroom, drive your kids to and from school, etc and exhaust and strain yourself because it only slows your healing process. Ice packs are your best friend. My boyfriend has been the most amazing nurse and friend I could have ever dreamed of. Neither of us realized how much I would be reliant upon him, and he has been my saving grace. With a good surgeon, a positive attitude, and the support of family, friends, and preferably someone with fusion experience it will make the process much easier.

The scar looks very good. The bumps are the instrumentation and bone because I lost 10 pounds in the last four weeks. That is very normal after spinal surgery, especially since I was pretty thin before.

The way I was standing makes my right shoulder blade and the side of my torso stick out a little but it is much straighter than this picture makes it look.

I was compensating a little due to pain. My shoulders are very even now.

Stego Spine

Scoliosis Journey - Week 11 and Counting

My first real outing from my house after surgery was for my youngest brother's 18th birthday party. Almost exactly one month after my surgery date. Kevin had to wash and style my very difficult curly hair, and my mom lives an hour away in Hudson. It was really nice to socialize and see my family and friends though. We could only stay about and hour and fifteen minutes and then we had to go home because I was in so much pain.

I feel very old that my youngest brother, who's diaper I changed and fed bottles to, actually turned 18 and is graduating high school this year. This is why I came back from Tennessee. I missed Adam's high school graduation and it's something I can never get back. Also, I wouldn't have met Kevin or gotten my amazing job and found Dr. Moreno. Everything happens for a reason.

Everything in my life has brought me exactly to this point. I overdid it this week and am now laid up in bed on my physical therapist's orders. Rotating ice and heat and using my tens unit for the first time. Not the ice but the tens unit and the heat. It's hard for me to remember to use the Spinal Stim/bone graft stimulator. I am supposed to wear it every day, four hours for an entire year from the date of my surgery.

That's the square blue thing. It's uncomfortable. It's a hard plastic material with a soft fabric around it and is only very slightly bendable. I have to wear it at least an hour at a time. When the plastic digs into my upper and lower back, it pushes on the inserted instrumentation and it gets swollen and builds fluid (it seems to like to do that) and starts to get painful. The FDA approved clinical research shows that 92% of fusion patients that use the Spinal Stim had a successful fusion without needing additional surgery or adjustments compared to only 68% without the device. And of the patients with unsuccessful fusions, if they used a Spinal Stim over 80% of those patients ended up with a successful fusion without ever requiring surgery. So I wear it probably at least 5 days a week, and whenever I can remember.

For now, I have to lay in bed and allow myself to relax and heal.Vacuuming, laundry, cleaning the bathroom, and going out to eat and driving are things I should not be doing. They are only to my detriment and slowing my healing progress and setting me back. I never said I wasn't unbelievably stubborn. I just have to be patient and allow my muscles to grow back and hope that most of my nerves wake back up. Dr. Moreno said I won't ever regain 100% of my feeling to touch in my back, but that's not a very big deal. My scar looks amazing and the metal is all holding well and appears to be fusing as it should be.

I saw a neck x-ray of another patient in his office that had a fusion all the way up into their neck and it made me very thankful that wasn't me. It could always be worse. I am thankful he was able to save my Cervical spine and the last disc in my lumbar spine. Kevin keeps telling me to focus on the positive and think about how far I have come and what's behind me. That's the positive influence I need and love.

My thought for today's blog, "Take calculated risks. That is quite different from being rash." - General S. Patton

Long Recovery Is A Hard Road

I have reached week 11 of my recovery post-op from my 13 disc spinal reconstruction/fusion. That is almost 3 months. 3 months seems like a very long time. It has not gone by quickly. While I am working very hard at staying positive and overall have been really strong through the entire process, I am still human.

A long term recovery is a long and tough mountain to climb. This is the most difficult thing I have ever done. I have been, basically, trapped in my bedroom for the better part of 3 months and it's starting to get to me. I get up and do a slew of things I'm not supposed to like vacuum, dishes, laundry, cleaning the bathroom, walking/sitting/standing longer than 15 minutes. All of these things are causing me to slow my own healing process. Sitting still in your bed other than using the restroom and doing physical therapy is painfully difficult.

I go to the grocery store and unless we take my walker or are only getting literally one or two items I have to use one of the motorized wheelchairs. What's very aggravating is lazy overweight people use them rather than walking, which is what they need most, and destroy the back support! So I have to sit upright and after being in the store an hour plus my back is swollen full of fluid and killing me. Then, back to the bedroom.

So I decided to change my surroundings a little and pamper myself through some online shopping of sundresses and bedding. I decided that I needed and entirely new bed set because that is my main focal point the majority of each day. Currently we have a light blue sea shell design comforter on our king size bed, that Kevin picked out, and I have had enough of looking at it lol. So I ordered a lavender comforter to calm my surroundings with only very small embroidering on it and smoky blue and purple sheets and pillow cases. What a difference sheets can make.

I am not the type of person to lay in bed all day long. Don't get me wrong, I love a lazy weekend or rainy day in the normal busy hustle and bustle of life...but this is something completely different. The "stay-cation" has turned into something occasionally resembling I don't know house arrest or something and is beyond old!

Luckily, I have an amazing boyfriend who devotes a lot of his time to taking care of me and spending time with me every day somehow so I have relief. It almost makes me cry when I think about how lucky I am to have that. We have a friend that was in a motorcycle accident and is very lucky to be alive and was in a rehabilitation center for months, close to a year, and that would have been me! Kevin has basically saved my life twice now. We played life which was great. I haven't had the dexterity to work on any of my jewelry yet, but I think I am going to try soon. I can't wait to resume my normal activities. I want to clean and cook and work out and lounge on the couch go out with friends, dance, anything. I am an invalid trapped in my body, bed, and home. And it's the most difficult thing I've ever done.

Working is very difficult. It is still difficult to manage the pain, let alone my business. I have to speak very slowly and work at a snail's pace compared to how I would normally perform. Accounting is challenging to say the least. The pain is all consuming and frustrating and it is hard to hide sometimes. Sometimes I just can't answer the phone. But all in all I am doing a pretty darn good job of managing things, if I do say so myself. And I do.

All in all I look great. I am healing very well and my overall flexibility is very good for what I had done, according to my physical therapist. She is amazing. I may upload my rehab exercises just to show examples of what I am doing during my recovery. I still have a long path ahead of me, but I have come a long way.

I feel how much stronger I am, I haven't lost weight, my stomach, thigh, and arm muscles are not deteriorating the way most do and I feared they would. I didn't have any surgical complications. I had many other complications in the hospital, but in the grand scheme of things they were miniscule compared to what I went through. Now I have an almost perfectly straight spine without a hip that pops in and out of place, degenerative discs, bulging discs, arthritis, and pinched nerves that made me double over in pain out of nowhere, etc etc. I am extremely lucky to have a family that loves and checks on me constantly and an amazing boyfriend, and a sweet little boy, that help me do most of everything. Even shaving my legs and styling my hair. How many men can do that for their women?

In a couple months I will be doing markedly better, as I am now compared to the night I woke up from surgery. I think about what I felt like, and how I am improving every day, and hold onto that. The new and improved future and an entirely different outlook on life.This was something I had put off for almost 15 years. It simply couldn't wait any longer, and there was no better surgeon to perform this operation on me. As depressing, slow, and frustrating as this recovery process is, I know that when all is said and done I will be thrilled to have gotten this out of the way and be 80-90% pain free and cosmetically look different as well. No more altering clothes and tops because of my Scoliotic body. I consider myself very lucky that I am as far along as I am and that I didn't have any more severe complications and am on a STRAIGHT road to recovery and being done with Scoliosis pain. And I can't even see the scar on my back, so it's like it doesn't even exist.

Do the things you do because you choose to do them for your own personal growth and success, not so you will be seen in a certain light by others. `

Always With Karma,

Amanda

Scar & Curve at 10 Weeks Post Op Spinal Fusion

Here are a couple pictures of my scar from my T4-L4 Spinal Fusion (13 discs) at 10 weeks. If I had done this when they initially recommended it while I was in high school I would have been practically butchered and my scar would be large, scary, and possibly embarrassing. I am actually proud of this scar. This is still a pretty intense scar, as was the surgery and continues the recovery process to be. Intense. You really can barely notice it from 10 feet away.

Overall I am dealing very well. I get upset about once a week, which is pretty good for being stuck in your bedroom and house except for grocery store trips and drives involving Dom. It'll be fine once we get him back because luckily his mother lives in my old stomping grounds and my aunt lives about a two miles away so I will go to her house in the mornings and hang out and work while laying on the couch, hanging with my awesome family, and watching tv until Dom gets out of school. Again, there is no sacrifice too large when it comes to Kevin and Dom. Parents make sacrifices for the children. Not the other way around.

Anyhow, scar photos and new pictures of my back compared to old pictures of my back. It's amazing. The non-stop pain and never-ending discomfort can be overwhelming at times, but I am dealing with it better and better. I am more than half way there. It's gone by slowly, but I can take it. That's all that matters. In a few months I will be a totally new woman with a totally new back and Terminator spine and it will just become normal and I won't have constant discomfort and pain. Ahhh, how I am so looking forward to day. Not much longer.....

This was my old back 01/18/2012. Changed by Scoliosis I had since probably 10/11 and was diagnosed at 14. Notice how the right hip dips in and how the right shoulder is higher at the neck than the left shoulder is.

Scar at 10 Weeks.My hips and shoulders are so much straighter and closer to being even than they were before the surgery. My shoulders are basically perfect. Cosmetic reasons were not the point, just an added bonus by my genius surgeon.

This was 9 days after surgery, you can already see that my right hip doesn't dip in the way it used to. Even with the slightly creepy scar that TOTALLY freaks me out. I have three more I can't bear to post again they are in http://scolioticrantingnraving.blogspot.com/2012/02/pictures-of-my-old-and-new-spine.html. It just creeps me out and makes me hurt more. I am a total wimp when it comes to gore. Halloween Horror Nights is fake. This really creeps me out. 

My Scar At 10 Weeks Post Op - In the middle it's still totally numb. Probably for a 6 in circumference around the area where you can barely see my scar is all dead. It was all "dead" it was numb on my entire back because they tore all my muscles and ripped all my nerves and everything inside my back. It hurt inside and it hurt to touch my muscle, but my skin is still probably 40% numb. Very weird. All in all my scar is amazing.

8 Weeks Post Op

So it has almost been officially 8 weeks since my 13 disc spinal fusion. The mental/emotional aspect is just as difficult if not more than the physical pain. Spending the majority of my time alone in a bedroom working from bed (which is NOT easy when you have as much paperwork as I do) and watching repeats of 90210, Sex and the City, other shows I've seen a thousand times and DIY, HGTV, Turner Classic Movies, etc is extremely boring and monotonous. Indescribably.

It is very difficult to work when I am in so much pain, and it's practically impossible to work on pain medication. My physical therapist says I am trying to wean myself off the medication too quickly. She says if I allow my body to become to stressed and fatigued while in pain that I am only doing damage to my body by slowing my healing process. I HATE pain medication. It makes me nauseous, dizzy, light headed, gives me a feeling of vertigo, confused, forgetful, not to mention the extreme nausea and vomiting like I experienced on Tuesday. I spent the early morning hours on Tuesday sitting straight up and vomiting into a trash can in our bathroom. The pain, stress, and straining that caused my back is unexplainable. I can't take it if I have to drive so I have to grin and bear it while suffering immensely. Sadly, I think there is one sick person out there who actually gains pleasure by this. Isn't that sad?

So I will be at 2 months tomorrow and my scar looks AMAZING! My back hurts all day every day. It's at the point where it's uncomfortable rather than painful sometimes which is much easier to deal with. I have begun doing actual exercises in physical therapy as opposed to breathing exercises and her doing very minimal stretching with me. I actually did some calf raises, sliding with my back against the wall down into a sitting position (hold for 5-10 seconds), and then a bunch of exercises on the table. I will upload the exercises my physical therapist tailored to fit my body exactly where it is in the healing process and what exactly it needs. I am very lucky to have found Moreno Spine & Scoliosis. Anytime I have questions, pain, concerns, need advice, they respond to me immediately and put me at ease. They are the best surgeons office I have ever personally dealt with, and I've been through about 7. Not counting Shriners' Hospital which is an amazing place that I can say only wonderful positive things about.

As difficult as everything is with my recovery and day to day life the terrible dark looming cloud of this court battle will be over soon, I am sure of it. Truth, honesty, and unselfish good intentions always prevail in the end. I just have to believe that. It might be taking longer than we hoped, but it will all come to the surface and be seen for what it really is in the end. Nothing done with negative, selfish, deluded intentions perpetuated by feelings of hatred, jealousy and bitterness can ever bring anything positive to fruition. I feel that is true deep within my soul. Kevin and I have never done anything intentionally or unintentionally that would hurt or harm Dominic or his relationship with his mother or his new step-father. Even after all of this we still never would, and that is why I know everything is going to be fine and we are going to get our boy back.

I am focusing on the positive, the future, and things to come.My healing process that is for the most part going well and moving forward. Kevin's business is bit by bit getting off the ground. I am really excited about seeing him so focused and driven with something again. He is SO close to finishing his degree which could not make me any more proud! He deserves more than anything to walk across a stage and get his bachelor's degree from the university he has always cherished and admired. I am so happy to have been a part of his journey leading up to this great accomplishment and milestone in our lives.

Through everything that he has been through, SO many trials and struggles with his ex and fighting to stay in their son's life and going between jobs and school to balance what is right for him but always doing what helps his family first and in place of his desires. That is only one of the countless reasons why I am madly in love with him and know he is my soulmate. After all of that, and especially what she has put us all and the child through Kevin really deserves something positive for himself that he accomplished without help from anyone else (okay, so I've helped with a paper or two-only subjects he knows I'm interested in because I'm a super nerd) that he put off and sacrificed for his child, ex-wife, and even myself on occasion.

I have tried VERY hard to do whatever it takes financially, physically, and with Dominic along with in our home so that Kevin can realize his dreams as well. I feel our relationship is fairly even and that we both allow ourselves and one another the time we want and deserve to do our own thing and work towards our future in our careers and family. I am totally off topic, but going through this surgery has changed me forever and made me look at the world in an entirely different way. Things that I used to care so much about and have a fit over seem so trivial and petty. Little moments like watching the sunset while we're driving Dom from school or seeing the sunrise over the water with the airport (his favorite) in the distance burn a small memory into my brain that I know I will cherish forever. Those are the things I have to try to focus on. And work of course, work work work. Reports reports reports. I live for my crackberry, quickbooks, and excel. Without them, I would be lost.  

Enough of my venting. Physically, I am doing pretty well. I am on a good path. Starting physical therapy earlier than the vast majority of patients. Hopefully I am not pushing myself too much too soon, which more thank likely I am because I have a tendency to do that.

My inspirational quote  today. "The way I see it, if you want the rainbow you've gotta put up with the rain." - Dolly Parton

Always With Karma,

Amanda

Photos from my Scoliosis Journey

Recent photo from 02/29/2012 Kevin and I went down to the concrete boardwalk near Pier 60 at Clearwater Beach (just 4.5 miles from our home =) for my walk! Felt amazing to get in the sun and feel and smell the Gulf breeze. Everyone around was so relaxed and happy, and big plus I bought a gorgeous sun dress at a little shop before we left! Amazing day <3

I was very deformed pre surgery

This is a photo of my Spinal Stim or Bone Graft Stimulator

Holy moly, this is what I looked like in the ICU with my NGT Tube, or as I call it the "Nose Hose" = miserable

Bandage over the small hole where they inserted the IVC Filter through my groin around my leg into my lower back (through my veins and arteries) and into my renal gland. Poor quality pic but you can see a little green tint. I had terrible bruising all over my thigh and hip.

They used a giant needle to insert a wire into an artery and then move it around through my hip into my lower back near my kidneys and into my renal gland. I was not aware this was what I was signing up for. If I had, I possibly wouldn't have been able to go through with it. Now it's just a tiny red bump slightly raised. A waste since I had it removed 6 days later. 

Again a poor quality photo my upper thigh was terribly bruised all the up into my hip.

A pic of my bandage after my IVC Filter removal when my body rejected the device only 6 days after having it implanted

This was SO uncomfortable. I couldn't turn or bend my head or neck AT ALL. They put this very tight compression bandage because they removed the filter through my jugular.

Once I removed the bandage. Small incision, but major irritation from my allergy to latex, natural rubbers, and adhesives.

You can see the indentation in my neck from how much pressure they applied on top of the removal site above my jugular vein.

Scary Sherry lol! This is why they did not allow children under the age of 12 onto this floor. My stomach was so swollen from the meds I look like I am in the maternity ward.

Pictures of my old and new spine

Below are pictures of my incision, x-rays, etc. Just to give an idea of what to expect if considering a fusion. After seeing how many and how large the screws are, my pain makes a lot more sense.If you look at the post after this I have pictures of what my back looked like before corrective surgery.

An incision photo. Dr. Moreno personally stitched my tattoo so I don't have to have it re-done.

Back Before Surgery

Another scar photo. Notice how much straighter my hips, shoulders, and shoulder blades are.

This is a photo of my new spine plus instrumentation. I have 26 screws and two 14 inch rods holding it together plus my own bone marrow and some from a cadaver fuzing it together.

This is a side view of the screws going through my spine holding the rods and my new improved spine in place.

An up close picture of the screws, ouch!

This is an xray from 11/2/2011 of my Scoliotic Spine pre-op.

Another xray before surgery. My ribs were twisting out of place dangerously and my lumbar spine was twisting inward which is very dangerous. That is why some of the screws go straight back, some sideways, etc.

My V-Neck Is Straight

Even though I am going into week six of basic bed rest all day in our bedroom, which has begun to feel like a prison, I am getting markedly stronger each day. I still get frustrated and may start to cry a little because it is very frustrating and difficult to be in pain all day every day, into the night non stop and barely be able to sleep. For the most part though, 80% of the time people can barely tell I even had surgery. Unless of course I am wearing my brace and using my walker. Or doing my funny hobble walk.

From the evening I woke up out of surgery until today, I am an entirely new woman. We went down to Clearwater Beach today. I could definitely use some sun from having three surgeries in a month, four blood transfusions and one platelet transfusion in a year and a month. We take a walk every day around our neighborhood which is shaped like a horseshoe, but it's gotten boring. We went and walked on the boardwalk running along Gulf Dr, cement for the walker there, and ended up walking a mile over an hour and 15 minutes! It was sunny and 80 but there was a cool gulf breeze that felt amazing.

Yes, we made this walk with my brace and walker. I must admit, I still look fabulous. Other than my Twilight looking skin tone. People were looking, at my brace and walker or maybe my hot boyfriend with his shirt off lol, and one woman even approached us and told us her daughter had to wear a brace in high school. We explained my story briefly and told her I am 5 weeks post-op and she said her family will pray and was very sweet. None of that bothers me in the slightest. Staring, wondering, questioning. I am proud of myself for finally having finished it. Healing and recovering as quickly as I am. Staying positive and only spending energy on things that will bring me success in life, happiness, love, within my circle of friends and family, etc. This life changing surgery has really changed my priorities and the way I look at so many things in this world. Mainly relationships. They are the single most important thing in this world. Other than personal happiness of ones self. 

On the plus side the couple times I have gotten out everyone is complementing me on how wonderful I look. "Supermodel" is the word that was used by more than one person lol! I am now 5'5 and around 115 pounds. Okay, I am probably closer to 110 but I was only 5'2 before! The amazing part is that I was petrified of losing all my muscle mass and even more weight, and luckily neither has happened. I have lost one pound and continue to gain more muscle. Most people post-op lose 10-15 pounds. Luckily, I have had to massively overcompensate for the total lack of use of my entire back. My arms, entire stomach, legs, and knees are taking the brunt of all of my weight. I was getting out of the shower a couple days ago and Kevin started poking my stomach and pointed out to me I have a pretty nice six pack. My biceps and shoulders are as nice as my goaled Sarah Jessica Parker (not at her current or creepiest of course, old school Sex and the City Carrie)! Even while laid up in bed and using a grabber to turn on my fan and light lol! It is very hard for me to sit still. I have broken the rules and pushed our small canister vacuum and wiped the bathroom counter, toilet, and sprayed out the shower and tub a couple times. I can push the shark steam mop but it causes intense electrical feeling shooting pains after about 10 minutes. When I stand for extended periods of time my lower  back begins to ache and burn like fire and I can feel the weight of all the metal. Then I look at or feel the bump and it freaks me out. Best to take it very slow. Let Kevin handle things. Just relax and work in bed. 

I have to share this because anyone considering a major spinal fusion for Scoliosis or multiple discs needs to know that the good vastly outweighs the bad. As long as you have researched your surgeon and they know what they are doing and you feel comfortable with them and their procedure. The finished product, IF you do everything you are ordered to by your surgeon, is amazing.

We took before surgery pictures and my surgeon wants to take afters and asked to show them to potential patients as a success story. Big pat on the shoulder for me. I'm the best at everything even when I'm not trying. That's not totally truthful. Pre-op I had gone into a crazed workout mode where I toned every inch of my body. I went into this and I kept saying things like, "I'll only be in the hospital 5 days, going to make a record!" (For the record Dr. Moreno said he thought I could get out of there in 5 days, we didn't anticipate the complications) Not! I was there almost 10 days and in the ICU almost 5 and neurological/brain trauma Critical Care the remainder. Can't win em all. I was up walking the very next day though, even with EXTREME distention and pain I walked further than any other patients did. 

The turning point of this entire thing happened a couple evenings ago. I went into the kitchen to put my glass in the sink and I could see my reflection in the kitchen window. I stood for a minute looking at myself and realized my shoulders are totally straight and the v-neck of my nightgown is laying in the middle of my chest. I haven't had that since I was a very little girl. My v-neck always pulled to the right and up a tiny bit because of the unevenness of my shoulders. My bras and bathing suits had to be constantly adjusted and never fit right. I had to get things altered it was so inconvenient and depressing.

I waddle shuffle hobble limp walked into the living room to tell Kevin. I looked at myself in the mirror above him and when I started to talk I began to cry. Tears of happiness from the sheer fact that I'm working my way down the other side of the mountain just started to pour out of my eyes. He jumped up and hugged me and got a little emotional too and told me how happy he was to see me really healing so quickly and on my way to being pain free. The relief and the reward of having my body made into what it was intended to be is just an astounding added bonus.  

Week to week I am having drastic improvements. It's easier for me to squat and kneel to get down to the ground. I can stay down longer. It's easier for me to get back up. I can bend forward about 4 inches now where before I couldn't even tilt my head down. I can reach quickly to the right and the left and before I could not really move my arms to either side or reach at all. I can stand almost completely straight up. I have sat in the living  room twice in the last couple days for more than 30 minutes! That is a big deal! We went to Sushi one evening. We went to the mall once to get my hair washed and blown out, some new underwear for my swollen Terminator lower back (we find out tomorrow if that goes away, lets cross our fingers!), and of course my own personal crack...Yankee Candle. I had to get a motorized wheelchair though. I still have to ride one at the grocery store as well. Three grocery store trips under my belt. Oh and of course the fun drive I have to put myself through to take Kevin through the drama his ex has drug everyone through. Plant City, Tampa frequently, and meeting the wicked witch Downtown. That's okay, there's nothing I wouldn't do for Kevin and his son.

I am able to stand in the shower for almost 15 minutes, but I still can't shave the outer-side of my legs. Kevin has to do that AND style my hair curly, which he did a phenomenal job of I must say. I'll post pictures of everything to make sense out of it.

I go see Dr. Moreno again tomorrow morning and we have a two page list of questions for him. I get the exact measurements for my new spine, pictures that will be posted, an assessment of my progress and pain, and the hopeful go ahead to begin physical therapy. I have cut my meds in half. I do not wake up in the evening to take pain meds. The morning is very difficult because of it, but I am getting stronger. I may have to gain 5-10 pounds to compensate for my new height, but that's okay because I AM TALLER NOW WOOOO!! Anyone in my position, or similar, understands.

I always said my growth was stunted. We didn't really realize until I finally was able to stand to hug Kevin in the kitchen and we stopped and he said, "Wow. I think you really are taller. You used to be down here." A couple inches shorter at the bottom of his chin. Now, I am able to kiss him without needing to tip-e-toe. We also judged it by standing next to Heidi and my Mom because we knew what that felt like. I can't wait to shop and buy new bras and bathing suits. My dresses look better, my nightgowns look better, everything.

The pain is finally noticeably lessening and I am beginning to feel a slight bit of relief. I have been working a lot more. Again, I couldn't be luckier to have such an amazing boyfriend and an equally understanding and supportive boss. The fact that my office is 4 miles from my house makes everything much easier. Emergencies and seeing my boss or his parents, the big bosses, at the last minute and Kevin picking up and dropping off deposits, accounts payable, leases and other paperwork for me weekly to enter from my home system my boss set up for me. When I was, and will be up and moving around again, showings were always very easy to plan because I was never more than 13 miles from any property or tenant at any time as long as I am at the office or my home. I am so lucky to have found this position and if not for this career I would not have been able to have my surgery as successfully with this surgeon at such a great hospital without a ridiculous unreasonable, and heck honestly un-rational cost to me.

He will never understand how grateful I am. I try to show him through working harder at all hours possible. I get him appropriate gifts during holidays. I tell him at least once every couple weeks thanks you and each time our health insurance premiums are due, I thank him again.

I am so glad to be really making improvements and starting to feel less robotic. I can't wait to see Dr. Moreno and get a real update on my progress and start a new physical therapy routine. He is my savior and hero. I know that sounds mushy and ridiculous, but he is the most amazing surgeon I have ever met. And I've met quite a few. Will update tomorrow with the hopefully good news and photos! Wish me luck! 

Inspirational thought of the evening, "Have faith in your own abilities, do not just wish for a thing, take action and get it." ~ C Pulsifer

Always With Karma,

Amanda

I Can't Believe I Did It

So today is (was) exactly 3 weeks post-op. I truly can not believe that I actually went through with the surgery and am lying in bed at home recovering. When I woke up in recovery I thought I was about to go into surgery and was telling the nurse about my latex allergy and she said, "Honey, you're in recovery. You're done. It's over." And I was like, "What?!? It's over? I'm not paralyzed? No complications? I really did it?" And she told me yes and I started yelling, "I did it I did it it's finally over!" A part of me never thought the day would come or that I would have the strength and courage to go through with it.

But here I am, making a miraculous recovery. Physically, I am healing very well. My scar looks amazing. My hips are so much straighter and even and my shoulder blade doesn't protrude as much as it used to. My shoulders are more level. Dr. Moreno couldn't do as much cosmetic tweaking as he wanted because I started bleeding badly during the surgery and they couldn't stop it or get it under control so he had to rush to finish my reconstruction/instrumentation implant/fusion and close me up. I only needed two blood transfusions, but I also needed a unit of platelets. I guess from all the loss during surgery. It only took a little less than 8 hours, but he wanted to spend longer had it not been for the hemorrhaging they couldn't control.

Surprisingly, I was very lucid and coherent from the moment I woke up in recovery. Which was quite a double edged sword. I was totally aware of all of my pain, the ICU nurse having no idea how to put in an IV and stabbing me about 9 times before my mother insisted on another nurse putting it in. Then on day three of recovery in the ICU came the constipation from the dilaudid (similar to morphine I guess, pain medicine through IV). So they shoved a giant tube, the circumference of my pinky finger, through my sinuses, down my throat, and into my stomach to suck out any food/anesthesia and release built up gas. My stomach was so swollen I looked like I was going to give birth to triplets.

The tube insertion was SO painful and uncomfortable. The tube was notched and I had to try to swallow it down while also gagging and dry heaving, bleeding profusely from my nose, and drooling everywhere. They had to toss and change my sheets and blankets from the blood. It was so traumatic my step-mom started crying and had to leave the room, my dad was holding my hand and started tearing up and had to look away, Kevin said it was hard for him to watch me in so much pain and so uncomfortable with nothing to do to stop it. THEN came the 5 day ice chip only diet! Oh, AND all of my oral medications had to be crushed up, mixed with water, and flushed through my nose hose! NGT Tube is the correct terminology according to my father. Miserable. So miserable. Any time I spoke, swallowed, took a breath, coughed, sneezed, moved, I could feel it in my throat and moving in my stomach. We'll get into the trainee nurse turning the pressure up too high and it suctioning to the side of my stomach and my blood pressure and heart beat sky rocketing another time.

I couldn't wear my abdominal brace (Abdominal Orthosis Donning Brace) because of the stomach distention so I was bed ridden about 90% of the day other than when I would get up once or twice and walk around the unit. I did 350 feet day two and three and 700 feet on day four. With no brace! It hurt, was done with very small baby steps and of course the assistance of my featherlight walker, but most patients struggle with taking 100-150 steps. I was in the hospital 9 days. I was actually becoming comfortable towards the end. I had a very nice private room at TGH with a view of the bay. A little cot/bed for my guests. Kevin stayed with me most of the time but my mom and dad each stayed a couple times as well. My father still comforts and eases my fears more than anyone in the world, other than Kevin of course. There is something about your dad, a man that raised and protected you at a very young age that transcends into a woman's adulthood and I'm really luck to have that.

I had lots of visitors and many flower and plant deliveries. All of which I was and am extremely grateful for. I was never alone. Not for one moment. There was always someone around helping to monitor and take care of me and make sure the nurses didn't mess up my medications, physical therapy, etc. You would be surprised, if we had not kept a log and asked every two hours when they came in the room they would have forgotten and or over medicated me multiple times. I spent either 4 or 5 nights in the ICU and the rest in critical care on the neurological and trauma floor. There were some very seriously injured and sick people and it made me feel like my surgery was insignificant and nothing too large to conquer at all. Compared to the woman across the hall having tumors in her brain removed and screaming and moaning in pain at all hours of the day and night, I felt thankful.



A lot of my dead nerves are starting to wake up a little. My friend Monique that is 4-5 months post-op said that it is a marathon, not a sprint. I have to keep reminding myself of that. I saw Dr. Moreno on Valentine's Day and I see him again next Wednesday. I will upload some pictures from my journey. From the IVC Filter implant, rejection, all the way through my surgery, recovery, and even my knew straight x-rays and my terminator back full of metal.

I was not prepared for how much metal was going to be in my back, forever. When I think about it I start to sweat and my heart races. I have 26 screws longer than my middle finger going through the side of each vertebra in 13 discs. Then there are two 14 in rods going length wise down either side of my entire spine. They harvested bone marrow from my spine and the remainder from a cadaver to fuse it all together. Luckily he didn't harvest it from my thigh like most surgeons. He says there's no reason since you're already tearing about the entire spine to cause me the pain of a bone marrow transplant from my thigh before a major back surgery. I agree lol!

I have been bed ridden for the last 5 weeks. It is boring, frustrating, and excruciatingly painful. But it's nothing compared to standing up. The weight and the pressure of all the metal, I can feel it where my top curve used to be and in my lower back. It's very uncomfortable and it hurts like nothing I could ever explain.

Luckily, my body hates narcotic pain medication so I can't take much. Addiction and all that garbage that come with it will never be a problem for this gal. I have really been trying to keep up my appetite because I can't stand to lose any more weight. I am now 5'4 and weigh 110 pounds. We are going to measure this Wednesday but we're pretty sure I am two inches taller! I busted my butt to get down to that size and maintain it after a brief but large weight gain between 2006-2008. I lost it all and have maintained it for 4 years. It's not easy. I will NEVER get large again though. I don't think it will be much of a problem with the extra stress on my stomach, thighs, arms, and especially my knees. I can't do much of anything for myself. I can only bend forward about two inches and the metal catches me and that's it. I have just started to be able to turn my head a little to the left and the right and I can reach very very slightly to the right to get medicines out of my nightstand drawer. I can only squat and it's very hard and painful if I want to get lower. I still can't handle even sitting up on the couch or in the recliner even with pillows propped up. For the most part I can't lean, twist, turn, bend, in any direction for any reason. CAN'T. Not won't or choose not to because of the pain. I don't think I can ever ride rollercoasters or fair rides again. Didn't think about that before. There are a few large con's, but the pro's so vastly outweigh them it makes no difference.

I am so thankful to Dr. Anthony Moreno for saving my life. For giving me back my quality of life and boosting my self esteem and self image. My scar is so small and hardly noticeable. He actually sewed up my back where my tattoo is himself to make sure it was perfect so I don't have to get it redone. You get what you pay for. I won't give an exact number because it's not appropriate. But this surgery cost over a half a million dollars to my insurance company. I got the Maserati version of spine surgeries. I have only found Kia's and Hyundai's, maybe a Toyota or two in the last 13 years, but Dr. Moreno is the Maserati of Spine Surgeons and Bone Grafting Specialists.

I look amazing for only being 5 weeks post-op. I can walk really far now and have pushed my canister vacuum and shark steam mop a few times. Kevin told on my to my at home nurse that came every other day and she really got onto me. They said that's still off limits. So are the dishes and all other housework. I still can't go to my office because I can't climb the stairs. I'm really lucky I have such an understanding employer. He bought me a brand new Lenovo right before Christmas because my old one had a bad battery because I work from home a lot. Of course Kevin has been the most amazing at home nurse, I couldn't ask for better. The kitchen could use a cleaning, but I can't really go in there so oh well lol! My family and friends have all been so supportive and wonderful. I just wish the time would go by quicker and I could be mostly better and starting my normal life again.

I will finish tonight with my most recent inspiration quote, "I've been motivated by overcoming challenge and overcoming the hurdles and obstacles that face me. There still is plenty out there to get motivated by."  ~ Andre Agassi

As Always With Karma,

Amanda 

Pics From My 1st Post-Op Outing / Ashton's 18th BDay!

Kevin & I at Mom's for my youngest brother's 18th Golden Birthday-and my first time out of the house post-op. I only made it an hour but it was nice to get out of the house and see friends and family.

<3 My soulmate, savior, best friend, and love of my life <3 Always there to support me through everything. I'm the luckiest woman in the world.

Katherine Rose & I. I love my beautiful youngest female cous <3

<3 My heart and soul minus our brother Adam <3

My Mom and I

Jane even came out! So great to see her!

My Mom and Aunt Vicky

Kevin & I

Happy 18th Golden Birthday Ashton!

It's finally here

I'm in the car with Kevin on the way to Tampa General Hospital for my spinal surgery with Dr. Anthony Moreno. I've had one hour of sleep, and I will admit that I'm holding back my tears of fear.

The time has come. Like ripping off a bandaid. A very large, 10-12 hour bandaid that results in a week long hospital visit. I just want them to put me under and get this over with. See you on the other side of this. 

Only 3 More Days

I only have three viable days left until my surgery. So many things are going on right now and I'm really starting to get scared, nervous, petrified is probably a better description. I've been thinking about the little things that I'm going to miss. Any and all personal hygienic/cosmetic personal maintenance is over. For example taking a shower, brushing my hair, washing my face, putting on makeup, doing my nails, plucking my eyebrows, putting on moisturizer, the list is endless. Then I start thinking about the major things I'm not going to be able to do. Work, maintain my home, cuddle in bed with Kevin, play with Dominic, walk normally, move my arms freely, exercise, feed myself, drive, ride in a car, go to a theme park for a year (which is big for me lol), go to anyone's birthday/events between now and probably May at the earliest (if I heal quickly, crossing my fingers). The list is endless.

Being dependent on friends, family, and mainly Kevin drives me insane. The loss of my independence and the ability to care for myself is very frustrating.There isn't much to do about it at this point other than jump in head first and get it over with. I can't believe this is actually here. I have never been so excited and scared at the same time in my entire life. As long as I wake up without complications I know I will get through it. I might bitch and moan and have a few diva moments, but I think I'll be deserving of that since my level of pain is going to be something most people will never experience in their life. Dr. Moreno is doing 13 discs. My T-3 to my L-4. Basically my entire spine other than my Cervical vertebrae and one disc in my Lumbar. Whoa. 

Here goes......

This can and will change...but today I'm ready

So today was very difficult pain wise. I woke up with my hip/pelvis, what I call, popped out of place and my pain level ranges from a 7-10 and then frequently surges WELL above that. When this happens there are two options. Option 1 is lay in bed alternating ice and heat while wearing my tens unit and hope that it will subside in 4-8 hours. Option 2 is put on the tens unit and ice pack and go about my life fighting and suffering through it and randomly screaming and yelling very loudly when the pain surges.

So today, only 11 days from surgery...I fought through the pain. I have things that I need to get done! Lots of things. Especially since I'm only 11 days from surgery! We just painted our room but there were some finishing touches to be put on it. I still want to pain all of the baseboards and closet doors in my house just to brighten it up. I am going to be a patient/prisoner in my own home for the next few months and I want to make it as calming, pleasant, and conducive to healing as possible. Today is January 8th and I still haven't taken down my Christmas decorations. The floors need to be cleaned, the entire house needs to be dusted, windows washed, dinner cooked, let's not even broach the laundry subject. I can't lie in bed paralyzed and immobile all day long! Screw it!

Before, I was trying to save my back and prevent further damage and pain. Now that I'm 11 days out, whatever. How much worse could I possibly make it by not resting while I should be when the whole thing is being reconstructed/fused/etc in 11 days? If I wasn't scheduled for surgery, I would have been bed ridden today. I simply don't have the time for that right now. Speaking of, I was watching some movie a couple nights ago and the woman says, "I simply don't have the time for the nervous breakdown I deserve." That is exactly where I am right now. With everything going on from surgery and my many tests and doctors appointments, the stress this is going to put on Kevin my friends and family, work, custody battle, Kevin's work, worrying everyday all day long about his son, life in general, maintaining our home and 7 animals, the list never ends...I could use a day of laying in bed and crying it out. There's simply not time for that in the schedule! Lol. 

So I'm pushing through, putting it out of my mind as best I can (while also unable to stop it from consuming the back of my mind 100% of the day) and getting everything pre-surgery necessary I possibly can done. The pain I am experiencing today makes me 100% ready to get this over with. Just a few more months of excruciating pain and then I will hopefully be 80-90% pain free. I was considering waiting/postponing two nights ago. I started having a severe anxiety attack while we were watching Cowboys and Aliens. The aliens were cutting and examining the humans on these tables and I started thinking about how that's practically going to be me in a couple weeks and I started hyperventilating and shaking. Then I started crying and telling Kevin how I can't do this right now and want to hold off a couple-few weeks to emotionally and mentally prepare myself a little more.

Today, all of those feelings are gone and I can't wait any longer. The pain is more intense than my bleeding ulcer, broken/fractured bones, stepping on a sting ray, being shot at close range with a bee-bee or paintball gun, cutting the tip of your finger deep with a knife, etc...I can't even explain. I can't drive because the slightest turn or twitch even by simply taking a deep breath sends the sharpest pains through my hip and pelvis that I scream in pain and would definitely wreck if I were in control of a vehicle. Then the rest of my back and ribs begin to ache and throb from compensating and standing in such a way to ease the hip pain as best possible. The only solution to this very large problem is the surgery. I have been putting this off for 14 years. It's time. I have found an amazing surgeon and my boss and family are on board. On my good days when my pain and discomfort is a 3-6, which is average for me and totally tolerable, I question if I want to go through with this. On days like today, I'd let them start cutting me while awake if I knew it would make it stop..eventually.

I know that I have a very long road of severe pain that I can't even comprehend. Ultimately though, the final outcome is going to be well worth it. And I'm going to be almost 3 inches taller! Woohoo! I'm super excited about that! Straight shoulders and hips, and NO MORE PAIN! In a few months. I have a very large mountain to climb, but once I reach the bottom I will have completed an entire transformation. Physically, emotionally, mentally, possibly spiritually, and I can not wait to be on the other side of the mountain. With a much straighter spine and none of this debilitating pain.

By the way, my friend Monique I met at physical therapy who is 4 months post-op and had a more severe case than I do, started a Scoliosis support site on facebook. She is an amazing woman and has been such an inspiration to me. I am so happy and thankful that I have met her. When I start to freak out and get worried and have questions, she is the only person who can really ease my mind. Only someone who has actually been through what you're going through can relate to you and give you tips and advice based on their own personal experience. Without her, I would have postponed this. They say everyone comes into your life for a reason, and I am seeing more and more that this is true. Monique was sent to me to help me through this and hopefully, vice versa.

Here is the link http://www.facebook.com/pages/Stay-Ahead-of-the-Curve/160880477349748  Please, if you visit like the page for us. I hope to help her work on an actual website soon. Between her graphic design skills and my computer/html/etc knowledge I know we can do this. She created the name, logo, and slogan "When life throws you a curve." She also sent me a beautiful pin that I will wear proudly every day. The long term goal is early detection and greater awareness to prevent cases like hers, mine, and so many others from getting as severe as it can and does and possibly avoiding life complicating and altering surgery.

Gotta go get the ice pack out of the freezer. Only 11 days until recovery begins. I'm petrified, but I can't wait.

My quote for today, "We must embrace pain and burn it as fuel on our journey" ~ Kenji Miyazawa

Always With Karma,

Amanda