FAQs #4: What Does Permanent Mean?

What does Permanent Mean?

Different words have different meanings depending on their context. Gage and I celebrated our Wedding Anniversary on Monday. Regarding our marriage, Permanent means, “Til death do us part!” For my wonderful husband and I, permanent means FOREVER!!!

However, in terms of my Disability, the phrase that my Medical Team and I have created is, “Permanent means For Now.”

When I told everyone that my Medical Team labeled my disability is Permanent, I received countless worried (and even angry) responses. Loved ones did not like the idea of doctors deeming me, a young, thirty-one-year old as permanently disabled. They wanted the doctors to do more. They want me to see more specialists. They encouraged me to get fourth, fifth and sixth opinions – hoping that my disability would change.

I understand this heartache and desire more than anyone! However, in this case, Permanent is the BEST “label” for my circumstance. I cannot return to work. I am currently unable to manage my pain. I do not have a firm grasp on what my body can tolerate, especially since I can often endure one activity one day and I will crash doing that same activity two days later. Right now, the pain is unexplainable. Right now, the Medical Team and I are dealing with the consequences of my surgery. Right now, we are learning what makes me “different” from other people who have had a Spinal Fusion and, even more so, why I am not recovering.

For now, Permanent means:
- Until I can find the right doses of medication or treatment to successfully manage my pain SO THAT I can lead a better life.
- Until I have a better understanding of my pain tolerance and physical limits.
- Until we find a career path that does not cause my body to experience more pain.
- Until Gage and I are able to be foster or adoptive parents.
- Until surgeons, doctors or scientists determine another treatment that will “fix” what the spinal fusion did not.
- Until there are further medical advances to aid chronic pain.

People assume that the word Permanent is going to keep me from hoping that one day, I will heal. That is NOT the case! For now, the permanent label is allowing me the time off of work to dedicate to my recovery, to attend as many doctor appointments as necessary, to decrease the stress in my life and to have a supplemental income that provides the means for my medications, co-payments and insurance.

Praise Report: Because my Medical Doctors all agreed that my disability is permanent, my Disability Provider agreed to extend my Disability until June 2013. (A month ago, I was told that my disability approval would STOP in August – which terrified me). Gage and I were so worried that, without the supplemental income, we would not be able to afford private healthcare, my bi-weekly main management treatments or my new, expensive pain medication. This news is MUSIC to our ears! What happens next June? The Disability Provider will work with both me and my Medical Team to determine if, based on my experience and education, there is a job for which I am qualified and can physically work. I am excited about this! If there is a career out there that I can actually do, I want to know about it! And, if I am in the same, incapable position as I am now, then we will determine that and I can (hopefully) continue to focus on my recovery and working towards a less-pain-filled life.

Book Update: I am having the best time working with two of my best friends, Melissa and Stephanie, on my book! Melissa and Stephanie have graciously agreed to be my Editors. I have finished seven chapters, have three in-progress and three more outlined. We are conferencing every few weeks to brainstorm and edit. These two ladies are encouraging me to enjoy the JOURNEY of writing this book, not just the finished product! I will blog more about my book SOON! Stay Tuned!!!

This completes the “FAQs About My Surgery” portion of the blog. If you have any more questions, leave me a comment or email me! I thank you for encouraging me to realize that, despite my disability or “label” – my pain does not define me and that I can celebrate everyday successes WITH you!

FAQs #3: Another Surgery?

FAQ #3: Can I Have Another Back Surgery?

You may recall that I was told by The Surgeon that it could not be determined whether or not the Spinal Fusion Surgery actually “worked” until a year passed. Part of my surgery entailed The Surgeon adding a Bone Growth Protein, which is like playing Dr. Frankenstein – NEW bone literally grew in my back.

What does this mean? The NEW bones created their own fusion. With or without the screws and the rods that were inserted into my body, there are also NEW bones that are now “fused.” My body is literally STUCK in this fused position because of the new bones.

After the year was up (July of 2011), the pain was even worse than before I had the surgery (June 24, 2010). The Surgeon said that, “because the bones grew and the fusion was not rejected, the surgery technically WORKED.” Can you believe that? I was in MORE pain, but The Surgeon was taking credit for a successful surgery?

You may also recall that I made a deal with The President of the PT Facility that I would get a second surgical opinion from a surgeon of her choice. (Look for “Sweet Dreams” in my blog archive – dated August 17, 2011.) I made an appointment with Surgeon #2 in August of 2011. Surgeon #2, kind as he was, told me that, because of the NEW bones, I can NOT have another surgery. My body is now changed. I have new bones. My spine is fused – STUCK – in this new position. The only way to “un-fuse” the Spinal Fusion Surgery is to literally BREAK MY BACK. ALL of the bones around the Fusion would need to BREAK. Then, IF I healed “correctly” from a BROKEN BACK, then I could possibly have re-constructive surgery and THEN I would need to wait and see how my back would heal from THAT.

Is breaking my back actually an option? Not a chance in hell! (Sorry for those of you with sensitive ears!) Surgeon #2 was being facetious. It was his way of letting me down gently…

Long Story Short… Until there are Medical Miracles or Advances, another surgery is NOT an option for me.

BUT - one of my dear friends (and a blog-reader), Paula, sent me this link: http://www.cbsnews.com/8301-3445_162-57428677/a-new-hope-for-back-pain-sufferers/?tag=contentBody;cbsCarousel
(cut and paste it into your browser). CBS did a Sunday Special on NEW ADVANCES in back pain treatments for people who suffer after spinal fusion surgeries. The FDA is expected to approve this drug/procedure in 2015 - I just need to be patient!

Still wondering what exactly “Permanent” Means? I’ll explain in my next blog – keep reading!

Fun Stuff: The book is going great! I have written 8 out of 13 chapters! I have two terrific editors! The website is coming along nicely! Things are looking good!

FAQs #2: Why Spinal Fusion Surgery?

FAQ #2: Why did I have surgery in the first place?

I was diagnosed with Scoliosis when I was 13 years old. Certain types of spinal deformity, such as Scoliosis, are commonly treated with Spinal Fusion Surgery. Scoliosis is an “S” shaped curvature of the spine that sometimes occurs in children and adolescents (adults do not "out-grow" Scoliosis). Fusion is typically recommended for very large curves or for smaller curves that are getting worse.

I was diagnosed with Chronic Pain Syndrome in 1998, when I was 18 years old, due to the persistent pain in my low back. From 1998 – 2005 I saw physical therapist after physical therapist to help relieve the pain. When PT wasn’t enough, I saw a chiropractor for three additional years. Nothing seemed to help. The pain was always there.

In June of 2009, my (then future) mother-in-law suggested that I get an MRI. The results revealed that I have Degenerative Disc Disease. For a year, I saw the Pain Doc. We started with cortisone injections. They didn't work. Then, I saw a Radiologist and received 3 rounds of Epidural Steroid Injections. No difference in pain. I was prescribed medication after medication which only masked the pain. The Pain Doc then prescribed another round of physical therapy. I went dutifully every week for months. After no significant changes were made, he recommended that I consult with an Orthopedic Surgeon

In October of 2010, I saw The Surgeon for the first time. He sent me to yet another physical therapist. After working diligently with her for months, The Surgeon finally agreed to a Pre-Operation (diagnostic) Procedure called a Discogram which would determine if I was a candidate for Spinal Fusion Surgery. Lucky for me, I was...

The rest is history…

For more information, look at my blog titled: "For You Doctors Out There" in my Blog Archive (July 5, 2010).

Still wondering if another surgery can “fix” me? Keep your eyes peeled for the next blog!

Fun Stuff:
I’m still working on my BRAND NEW WEBSITE, so keep your fingers crossed and ideas coming!