RESTORING HOPE

“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all,” (Dale Carnegie).

After about a month of preparation, we finally had our Team Meeting at my Rehab Facility. Around the table sat: my regular PT, Nancy, Dr. Julie (the Facility President and my first PT), Mark (the Vice President and my Pain/Biofeedback Counselor), Gage (my husband) and myself. I came with a page filled with questions and a mountain of prayers; however, I had no clue what to expect. Even with clueless expectations, I do not think that anything could have prepared me for what happened next…

Nancy sat to my left and passed out two pages to the Team: one was an Agenda and the other was a list of six goals for me to accomplish over the next eight weeks. As we discussed each point, Gage sat to my right, intensely taking notes. I went into the meeting hoping for clarification more than anything. The summer had led the Team (including me) to a stalemate and, mostly, I wanted to know: who was In Charge of me (aka my Case Manager), what were my Treatment Goals and how would my Treatment Plan be reevaluated to show whether I was making progress? Needless to say, I received much more than a little clarification at the meeting; what Nancy and the Team handed me was the Ultimate Plan for Extreme Recovery.

We easily soared through the clarifying questions. Nancy will assume the role as my Case Manager, as she sees me twice weekly; however, Julie will see me every-other-month to conduct an FCE (Functional Capacity Evaluation) in which she will administer the first one in a week to gather baseline data and then compare each FCE that follows against the first, and previous, to monitor progress. (As the former Data Team Leader at my old job, this information was music to my ears!)

Additionally, I was told that I would be required:
- To keep a Pain Log that recorded my activity and pain level EVERY TWO HOURS. I am to log this information daily for the next four weeks. The Team explained that by doing this log, I will be helping them determine the function of my pain, my triggers, and my levels of endurance (and pain) during activities.
- To keep an Exercise Log that will hold me accountable to complete the given PT exercises daily to ensure that I am adhering to the Treatment Plan outside of the Rehab Facility.
- To gain 5 lbs over the next eight weeks; to do so, I am required to keep a Food Log and show it to Nancy every few days so that she can see that not only am I eating more calories each day, but that the calories are coming from healthy foods. The Team explained to me that I am very much underweight and this is a detriment to the Treatment Plan. Right now, my body is “eating my muscle for energy, as I have no fat left for it to use.” This is extremely counter-productive, as the purpose of treatment is to GAIN MUSCLE; without it, my body will not be able to rehabilitate.
- Starting October, I will be adding weekly Biofeedback Therapy to my regimen. Mark would like to teach me to better recognize my muscle-activity and how to control the over-use of muscles; he will also use these strategies to instruct me in multiple ways to manage my pain without medication.

I agreed to the above logs & Biofeedback, even though I knew that they would take some time to get used to completing them and to stick to their guidelines; then Nancy proceeded with some tremendous expectations:
- In addition to my PT exercises at home, I am to start adding extra exercises to my list while I am at the Rehab Facility. I will start next week by going to the Facility early and riding on the stationary bike for 10 minutes prior to my PT appointments. However, the Team would like for me to constantly add-on to these extra exercise; they want me to build-up to coming to the facility daily to do these additional exercises, and each week, they would like to add to the exercises. (To break this down, in addition to my 3 sets of at-home PT exercises, which take a total of 45 minutes daily to accomplish, and the 1 mile each day that I am currently walking, I will also be working-out at the Rehab Facility several times each week, if not daily, possibly working out up to 2 hours each day).
- (LONG-TERM GOAL:) Following the above program, by THIS SPRING or THIS SUMMER, the Team would like to see me spending 2-4 HOURS EACH DAY at the Facility (in addition to my PT appointments and at-home exercise plan). They explained to me that it would be like a simulated Vocational-Rehabilitation program, for how can they accurately determine my stamina for returning to the workplace if they do not see how much I can endure on a daily basis?

The last two parts of the program were the most overwhelming to me for many reasons. First, I have been told my so many physicians and surgeons that I would NOT be able to return to work NOR would I “get better” that it is enormously difficult to imagine that my tired, aching body would actually be able to attain such lofty goals. Second, THEY BELIEVED IN ME! The Team continued to believe in me even when I gave up on myself. I did not think that I would EVER be able to put in that much effort into a day’s span ever again, but The Team believes that I can – and they are willing to work very hard with me every step of the way to see that progress is made and that rehabilitation will be a reality for me. Yes, it will take a considerable amount of time and effort on my part, not to mention dedication and a severe mind-shift; and no, 2-4 hours each day is not full-time, but it is at least a start. This is the start of the rest of my life…

When Gage and I returned home after the meeting, I was still in shock. I was still in the “I cannot possibly do ALL of those things” phase. However, Gage showed me another side – he said that the meeting gave him hope. He said that hearing their goals for me made him believe that I could achieve them, that I could get at least “a little better” than I am now. Gage promised to help me every step of the way, even if it meant helping out more around the house if I put in a “long day” at the Facility, exercising at home with me when I had to do my daily routines and sacrificing financially so that I can attend all of the PT appointments ahead; Gage even signed up to the online Fitness Website that I found to log my daily calories so that I didn’t feel like I was “all alone” in my tasks.

With so many people believing in me, it’s hard not to start having faith in myself, too! Most importantly, I was reminded that God hadn’t forgotten me. For so long, I had felt left behind… I had felt as if all of my faith had gotten me “nowhere” and that I was a “broken” human being. Yesterday, with so much hope surrounding me, I was reminded that God has a plan for everyone – and he will use anyone he can to carry his plan out.

Nancy’s exact goals for the next eight weeks for me are:
1. Stephanie will be consistent with keeping a daily pain log to monitor pain and activities.
2. Stephanie will be independent in her home exercise program, completing her exercises three times a day.
3. Stephanie will have a good understanding and show good judgment with pacing activities and have a good activity to rest balance.
4. Stephanie will be independent in her nutrition and have a caloric intake of 2000-2400 calories/day for adequate weight gain of 5lbs.
5. Stephanie will understand the importance of adequate sleep for a good rehab potential and get at least 8 hours (8-10) of sleep per night.
6. Stephanie will be independent with an exercise program at The Facility that she initially performs before or after therapy, with time increasing as she tolerates and therapist determines.

Friends, loved ones, believers, please pray with me that I will accomplish these goals. Right now, more than ever, I need your strength and encouragement. Thank you for not giving up on me; thank you for your hope.

Sweet Dreams

Last night, I had a dream… It was as dreams are, fuzzy and out-of-sequence. I was at a hospital and I realized that I was on a waiting list. The list was short, and I was anxiously praying that my name was the next to be called. One name rang from a nurse’s mouth and a woman rose from her chair and disappeared from the room. I noticed my heart beating faster. Another name was called and again, a woman arose and was gone. I was heart-broken…

Next, my dream took me, floating, in an operating room and hovering along the ceiling. Three bodies lay on surgical beds, draped in paper sheets and surrounded by monitors and people in scrubs. The body in the middle was new; she was not on the waiting list. She was a car-crash survivor, although she was barely surviving. The two bodies on either side of her were the two women from the Waiting Room. As I drifted above them, I realized that each woman was undergoing back surgery. The survivor was receiving parts of spine from the other two women; however, at the end of the surgery, all three women were healed. All three women were better. But not me… My name was not called. I was still in pain…

* * * * * *
This dream could be analyzed to pieces; however, there were two distinct things that I realized when I awoke, breathing heavy and heart beating out of my chest. The first was that I dreamt that I was in pain. This was highly unusual for me. Even though I threw my back out over two years ago (being partially crippled since then), my dreams are my escape. In my dreams, I can run, I can play tennis, I can do anything you can do…. And, I am NEVER in pain. Secondly, I awoke sad, really, really sad…

* * * * * *

To bring you up to speed, instead of returning to duty on Monday, August 8th, with the rest of my Special Education colleagues, I had finally gotten an appointment with one of the (other) top spinal surgeons in the nation. This surgeon was referred to me by Dr. Julie. It was her very strong recommendation that I get a second opinion regarding my fusion. Dr. Julie wanted the Fusion OUT; she felt that it was “too restrictive” and that if removed, she could manually manipulate my body through strenuous Physical Therapy and exercises and, hopefully, decrease the pain the I felt every second of every day.

My “bargain” with Dr. Julie was that, if I was granted Medical Disability, I would get a second opinion from HER Surgeon (aka “The Surgeon with the Heart”) and consider another surgery. I never break a promise.

Because I work with several people in Dr. Julie’s office, I regularly update each of them on my current progress, needs, pains, improvements and status. The following is the email that I sent them after my appointment:

Hello Wonderful Team!

I know that we briefly chatted yesterday, but I wanted to give you the official "low-down" about how my appointment with The Surgeon-2 went on Monday (August 8th).

Dr. Julie, as always, you were right - he was "a surgeon with a heart!" Gage couldn't get there until 3:30 pm, so The Surgeon-2 extended his office hours (by 30 min) to see us, and we never once felt rushed out the door!

X-Ray Review: Surgeon-2 agreed with Surgeon-1 that the Spinal Fusion looked "solid and secure" and that it appeared as if the fusion "took." He said that, according to the x-ray, the surgery was successful. He also said that the bone around the fusion did appear to be growing, so with or without the "hardware" the fusion had "taken;" therefore, was permanent.

The Screws: Gage and I explained to Surgeon-2 that we were unaware that I was getting "additional" screws in my body (in addition to the fusion) and asked him about them. Surgeon-2 explained that there are two ways in which a surgeon can "go in" for Spinal Fusion Surgery: through the front (stomach) and through the back (spine). Surgeon-1 chose to go in through the back because "biologically, it made more sense to use this approach." According to Surgeon-2, when doing a Spinal Fusion through the back, Surgeon-1 has been a "leading surgeon" to promote and implement adding the iliac screws. Surgeon-2 further explained that the iliac screws were designed to support the S-1 part of my spine. He said that, mechanically and structurally, I needed the screws to support the Fusion and that if they were to be taken out, the Fusion would not be supported and it would likely lead to dangerous problems.

Can the Hardware be Removed? Yes it can, but Surgeon-2 highly did NOT recommend doing so; Surgeon-2 also informed us that Surgeon-1 had written a paper on the dangers/risks of removing any hardware after a Spinal Fusion has been done on a patient. Furthermore, Surgeon-2 explained that "even if I were to remove the rods & screws, because the fusion was a 'success' and the bone-growth has occurred, the fusion itself would still be set; therefore, I would still be Fused." He explained that the Extreme Case would be for him to remove ALL of the hardware AND "break" my back to "start over" - but he would NEVER do that; it is too painful and the risks are too great.

After a physical exam, Surgeon-2 explained that the only thing he would even consider taking out was the right iliac screw IF it were protruding from my back and very tender/painful to the touch. It is not; therefore, he would not do the procedure.

Other Surgical Options? Surgeon-2 told us that he does not feel that there are any other surgical options for me. He spent a lot of time reviewing Surgeon-1’s notes. He saw all of the non-invasive and invasive treatments that I had tried prior to surgery, including the discogram. Surgeon-2 explained that the discogram clearly showed that the discs that were "likely causing the pain" were the L-4 & L-5 and that he supported Surgeon-2’s decision to proceed with the fusion. Unfortunately, it did not reduce my pain; it actually increased it.

Why do I have pain? Surgeon-2 does not know... We discussed my scoliosis. He explained to us that because I have a rotated spine, my muscles and bones are rotated, too; however, he does not think that this "should" cause me pain. Surgeon-2 explained that just because someone has scoliosis (or Degenerative Disc Disease), does not mean that they are in pain - even though I have both and I am in pain.

I then told Surgeon-2 about "the knot" (the notorious trigger that you all know about on my left back/side); he examined it and said that he thought it was just "rotated muscle" and that it "should not be causing pain." I told him that it (the trigger) is, to me, the greatest area where I feel pain, yet he did not have an explanation as to why...

Non-Surgical Options: Surgeon-2 and I discussed my current Physical Therapy & Pain Management Treatments. I explained to him, as best as I could, that Dr. Julie wanted me to see Surgeon-2 to look at Plan A & Plan B.

Plan A: Have another surgery to remove the hardware and then work with PTs for rehab.

Plan B: If surgery was NOT an option, Dr. Julie & The Team would help me "re-wire" my body (muscles and nerves) to reduce the muscles that are over-compensating for the muscles that are, for some reason, not working hard enough.

Surgeon-2 said to go for Plan B and to focus on Physical Therapy and Rehabilitation.

What about the pain? Surgeon-2 did not deny that there was a lot going on with my back and that, unfortunately, I am in a great deal of pain - even more now than before I had the Fusion Surgery; however, he did not have any answers as to The Source of the pain. He told me that I need to "learn how much (physically) my body can handle and then learn how to live with the pain."

Now What??? Team, I need you now more than ever! I am discouraged and I need reassurance - I cannot live the rest of my life "getting by" and in this much pain! I believe that, with all of the great minds working together at this office, you CAN help re-train my body to help me find a New Normal. I promise to put in the work - I just need your dedication to create a Treatment Plan for us all to follow....

Mark (Pain & Biofeedback Counselor) and I talked about creating a Treatment Plan that would help me physically and mentally throughout this process. I have discussed this plan with Dr. Julie and the other PTs. Yesterday, my regular PT, N, said that she would meet with you two (Mark and Dr. Julie) to discuss this further. I am anxiously awaiting your thoughts!

Please let me know if you have any questions about the information that I have given you. I will also try to get a copy of the dictated notes from Surgeon-2 to share with you. You are a wonderful Team of people - thank you for dedicating yourselves to helping give me the hope that one day I will have less pain and live a somewhat-normal life!

Thank you!
~Steph

* * * * *

My appointment with Surgeon-2 was “bitter-sweet” (as my husband called it). Sweet: because I was absolutely terrified at the thought of having another surgery. We now know that surgery is not an option; therefore, hopefully, Dr. Julie & the Dream Team can create a plan to rehabilitate me without a knife… Bitter: because I have seen two of the TOP Surgeons in the nation (literally, thanks to many strings being pulled in my favor) and yet neither of them have any clue why I am in so much pain or the source of the pain itself.

Thankfully, my Dream Team is not giving up. We have a Team Meeting (my 2 PTs, Mark, Gage and I) in a few weeks where we will create and discuss expectations, goals and a Treatment Plan. Additionally, N and I have a new PT plan to “tide us over” in which I have a daily, rigid regimen of exercise, stretching, massage & a short walk (along with additional physical activity) to complete in addition to going to the office twice each week for myofascial release.

* * * * * *
Before last night, I thought that I was “okay” with not having surgery again… Am I? Is some part of me desperately seeking a quick-fix? Do I fear that I will “never get better?” I guess I’ll just have to continue to put my faith in God, in His Plan, and see where it leads me… Sweet Dreams…