Monday, March 26, 2012

Preparing for my SCS trial and Permanent Implant Surgery

Being inspired by another spinal cord stimulator patient, I have begun this blog to track my journey with a spinal cord stimulator trial and hopefully implant.

Let me introduce myself. My name is Johanna and I work full time at a local medical facility managing the fitness center and programs. I am also in graduate school completing a Master's in Social Work.

My story actually began at around age 10. Unknowingly I broke my L3 vertebrae after falling off a picnic table on my parent's patio. Being half monkey, half girl, I climbed anything in sight. This particular day I climbed on to a rattan love seat I had hoisted up on to the picnic table. Upon falling off the edge of the table, I was taken to the ER at Naval Medical Center San Diego (then known as Balboa Hospital).  My left elbow was broken, but it wouldn't be until I was age 42 that the L3 would be discovered, when I was diagnosed with severe degenerative disc disease.

I was sent to see the head of neurology at Scripps Clinic Torrey Pines, part of a major San Diego network and after some pretty brutal testing in my legs (EMG) it was determined that it was an ortho-spine issue and I was sent to the head of ortho-spine. I am thankful that I was able to land in both MD's laps. Based on the results of the Xrays and MRI, isthmic spondylolisthesis (view article and imaging) had resulted and I was given 6 months (a pretty standard time for spinal stuff) to have surgery or risk permanent spinal cord injury. I had the surgery ASAP!

After 4.5 hours face down on a Stryker frame, two rods, four screws, a cross wire and 25 staples later, my surgery was complete. I spent 3 days in the hospital, came back from that surgery with a 10" scar down the lower half of my back and was horseback riding in Maui 9 months later.


There was some cervical disc bulging discovered during this time based on my MRI results, however, my MD said it was no cause for alarm and he didn't think it was going to progress.

Two years later, March 2007, I was struggling with pain in my hands and fore arms, I soon lost the use of my L hand. Here we went again, another spinal fusion. According to my MD this one went textbook. I have one plate and two screws in my C 6/7 joint space now. http://www.spine-health.com/treatment/back-surgery/cervical-spinal-instrumentation

A risk that can and has occurred is the narrowing of the disc space either below or above the fused area. My L 3/4 space has lost around 50% of the disc with no rupturing or bulging. So, surgery is out and epidurals are in. I have also lost disc space in the C 5/6 joint space and will address this if necessary,  when the time comes.

I had my first round of epidurals (laterally injected) last October 2011. The first series gave me a lot of relief from the leg  and foot pain, tingling and numbness. If you are experiencing these symptoms together, you aren't crazy! You can be numb and in pain at the same time! Unfortunately the relief from the epidurals was short lived and we are on to the next step.

The next step is to have a spinal cord stimulator trial. This will occur in two more weeks and I am excited to see if it will help! Maybe my pain med will go away and I will live without it completely!  Here is a video so you can see what this is all about. http://youtu.be/sEaD9bHO7nY

MARCH 26 th. D-DAY!
Today is March 22nd. I am preparing my house and life for the next week of my SCS trial. I am looking forward to see if this works for me. I am not afraid or nervous. My MD, Christopher J. Chisholm,  is kind enough to have invited my oldest daughter who is an RN to view the xrays afterward and he will walk her through everything they did. I want to see those pics too!
Will take a picture and post when I am home after having the SCS trial device inserted.  

March 26 th:
Today at Comprehensive Pain Management Specialists, my trial was inserted. I have a St Jude trial SCS device. The insertion site is sore, but the feeling of the device is awesome! I have 6 programs from which to choose, my favorite for laying down is a slow, rolling feeling, of which I have yet to name. My favorite for standing and sitting is my shiatsu setting! Wow, it is awesome.
I have taken a couple of pictures. The first one is the actual control unit, you can see how simple it is to  use. It can clip on to the waistband of pants, or if you are in something like sweats or yoga pants with no real waistband support, you get to wear the really cool 1980s fanny pack!
Here is the unit:

And here is how the leads are secured as there is nothing else holding them in place since this is only a trial.
If you are getting ready for an SCS trial, make sure to plan ahead for no bending. twisting or lifting more than your MD will allow. Mine is limiting me to 8 lbs. I have an EZ Reach for both home and work. Makes it so much easier to be a bit more independent. You also will feel like a Parks and Rec worker!!!!!!

No bathing is allowed, in order to keep any bacteria from entering into the spinal cord and protect the device. Be prepared by purchasing microwavable bathing cloths and some dry shampoo. 
Hoping that tomorrow there is less site pain and I can work a full day. I will listen to my body.
Normally I would wear athletic wear and running shoes to work, however, it is imposable to not bend and tie my shoes. I will wear regular office attire and flats that can just slip on. You must prepare, prepare, prepare! Get every room in your home ready, especially of you live alone.

I will update as this week goes by, hopefully this will be helpful to many. 

March 27th, day 2 of my trial SCS.
Today I attempted a full day at work, however after  6 hours I was done.  I hadn't slept well the night before and my mid back was just too tired. Not bad for the day after. Tomorrow is a new day, I will once again rise before the sun, drive to work in the dark and assume my regular duties (as much as I can do without the bending, lifting and twisting. BLT). I have less pain as the night has gone on and feel like there is hope for a decent night's sleep.  Praying for real sleep, rest and a good day tomorrow!

March 28th, the second full day of my SCS trial:
  I woke with significantly decreased pain at the insertion site. This allowed me to notice the chronic pain levels, or lack thereof!
  I turned off my device, felt none of the back and foot pain that would cause me to limp to the restroom, in order to get ready for my day. That was such a wonderful thing! I have lived with this level of pain for 2 years and to wake without it was wonderful!

  My dear husband made sure neither of our two cats could come in during the night which kept me from interrupted sleep also. I actually only woke twice and fell back to sleep! I will see how I last as the day goes on, it is still early.

   I worked a full day today, visited with a friend and went to the salon to get my hair shampooed by my stylist. After that I stopped by two stores in the mall and drove home. My insertion site is a bit more sore than  this morning. As a result I am resting with a heating pad set on low and updating this blog! When I spoke with my St. Jude rep in detail, he said he thinks I may be a great candidate for the permanent  implant!  The MD will make that final determination. I do have two more days of the trial in order to see if the effectiveness remains. Off to sleep now, it has been a long day.

March 29th, day four of my SCS trial.
  I had a great night’s sleep! I woke only twice, actually had some REM sleep and had dreams. This has not happened in ever so long! I did not keep the stimulator on during the night and when I woke there was NO low back pain at all! I did have a little tightness in my lower leg, but nothing out of a normal range for just waking. I just turned my SCS unit on and will see how this day goes. The insertion site is a bit sore, but that is to be expected.
  I  have been using this as a teaching too,l for the fitness specialist interns who are assigned with me for the next few weeks. We are at a teaching hospital; why not teach them something new? 
  Today I was able to work a full 8 hours and to exercise 25 minutes on the elliptical trainer. Remember if you are allowed to exercise to keep the activity opened chain. This means that arms or legs are free of the machine so the spine does not become an axis for the activity. 
   Later my husband and I went to dinner and for a stroll at the lake afterward. I only went about 1/4 mile, not far, but it was my second exercise activity for the day.  Tomorrow morning will be telling dependent on how I feel. 
  I also say goodbye to my SCS trial device mid morning. I am unsure what the near future will bring and I at least am praying, trusting and hoping for all good things!
March 30th
  This is the last day of my SCS trial. Later this morning  the device will be removed and we will discuss the effectiveness of the SCS. I was a little sore this morning after increased activity yesterday and I am laying here with my shiatsu setting on. The pain isn't as high a level as it typically is, so that is a good thing!.
  I will be back after my appointment and update on what the decision will be.

Here is the last shot wearing my SCS trial device.

   My leads are out, it was a little uncomfortable having them removed, but no biggie. A few of my symptoms have returned, but not all. My MD's Physician's Assistant, Maria, removed the leads. She spoke with me about how I felt during the trial and said that since this was successful, they will submit to the insurance company for a permanent implant. This could take up to 6 weeks. I am hoping for sooner rather than later.

March 31st
   The day after; my symptoms have returned and this was to be expected as unpleasant as it feels.  I look forward to that phone call from my MD's office!
  Today is day 2 after the removal of the trial device. I have to say I feel physically wiped out and  it is a bit difficult psychologically going back to living with chronic pain.  Again, I hope and pray for a speedy and positive response from my insurance company!

April 6th, Good Friday.
  I have much for which to be thankful and am doing my best to keep those things in mind on this Good Friday and Easter weekend.
  My pain is back and it is once again hard to get moving, bend down or squat and try to get back up in order to grab anything from a lower space. Making the bed this morning was especially painful. I hope to hear something about insurance approval for my SCS soon.
  Until that time I will count my blessings, which are many and focus on the meaning of this weekend.
  Have a wonderful Easter weekend everyone!

April 9th:
  My trial was complete a week ago, now we proceed with all the appointments for the permanent implant. I first must have an MRI of the thoracic spine, where the leads will be placed.  After that is done I meet with the neurosurgeon, Christopher Uchiyama M.D. in order to discuss the MRI findings, the procedure and any questions I may have.
  Surgery will be scheduled to coordinate with both the neurosurgeon and pain management MD's schedules, as they will perform the procedure together.
  So, first step for this week is to get the MRI done and report to my pain management doctor's office so they can alert the neurosurgeon for his review.

April 19th
  With the MRI completed on April 15th, I now await a surgery date. The neurosurgeon has submitted to my insurance and upon approval (my insurance is usually pretty quick) the two MD's will decide a mutual date to complete my permanent SCS device.
  I was advised by a wonderful support person and friend,  that I could feel the pain more intensely post SCS trial.
  I felt ok, some symptoms returned, but this past week has been much worse. Still pushing through and working around the pain, I continue to do cardiovascular exercise and stretching.
  I know there is an end in sight and I am thankful for medical options that weren't there in the past.

  After a long day at work I drove to school. I walked from the parking structure, climbed 3 flights of stairs and crossed the street. Heading toward my school's building while walking, I tripped over nothing, my leg just was not cooperating. I sat in the classroom for a few minutes and realized I just did not feel well, so, I left! Taking care of yourself through the process is very important, I was reminded of this today.

April 25th
  I called the insurance company yesterday and the very nice representative told me that the approval for the SCS surgery is still pending and it could take up to 30 days for approval.
  That was a bit of a let down, but I will push on.
  A lot of stress between work, school (we are at the end of a semester) and home.  Feeling a lot of pain all the time and a lot of spams at night.
  Still working out and stretching. Doing my best to manage the stress as it increases the pain. I trust that everything will come together at the right time.
  My oldest daughter recommended I take melatonin at night before bed along with the advil because the advil was not making a dent in the pain and spasms.  I did just that and did sleep a little better last night, but still not as well as when I had the trial stimulator going.  If I have to take something stronger for the pain, until the surgery is over, I will.  Putting a call in to my pain management MD's office today.
  Thats about it for now, not a lot of progress and yet things are still moving forward.

April 26th
  I found out yesterday that the surgery for the SCS is only performed once each month by my MD's. If the Ins co does not approve by the end of April, I have missed a cut off and will have to wait until June to get the implant. Thus, I have been making phone calls to find out the status every other day. I was able to get a number for the approval area of the company and spoke with the representative there. She said they are waiting for clinical info from the neurosurgeon.
  I will call his office later this morning to alert them to the fact in case they are unaware.
  The spasms and pain have increased and I do have an appointment on Friday with my pain management MD. Might have to take more than advil (which isnt working at all) to make it through and get sleep at night until the surgery is complete.
  Again, through adversity we must press on, it gets hard, we all get a bit down during these times and chronic pain can truly affect a person's brain chemistry and mood.
  If you are at this place, let me encourage you to stay ahead of your pain, keep moving and get rest!

April 28th
  After a visit to my pain management MD's office, I left with some Rx to allow me to sleep, calm spasms and pain until the surgery is completed.  I was also told that the result of my MRI showed a bulging disc in the thoracic area, the one part of my spine I thought was completely untouched and healthy. The neurosurgeon noted in my record that he will take care of it at the time of surgery. I will call on Monday to get a copy of the report sent to me so I may see the results of the imaging.  I continue to exercise, stretch and wait for the green light from the insurance company (who had everything they needed from my medical record Friday morning). Ahhh, the joys of my father's DNA!

May 2nd
  Still no approval of the surgery, it is pending. Meds are helping to calm the spasms and associated pain, so at least I am sleeping again. I will continue to push foward, get past this bump in the road and move ahead!

May 3rd
  I just called my insurance company and was told that as of May 2nd, I have been approved for my surgery. Finally!!!!!!!!!!!! Now it is up to the MDs, SCS rep and hospital to work out a date. At least it feels as if we are moving forward again.

May 9th
  I have my surgery date scheduled for 2 weeks from now and next week do my all day pre-op marathon at the hospital.  The neurosurgeon's office sent me my pre surgery info and paperwork so that is one thing that wont need to be done next week.  I am finishing up the very last prep work for the Fall semester of my classes, getting things organized, assigned and scheduled at work for coverage while I am out recovering. It is nice to see a light at the end of this tunnel.

   If any of you find that you hit roadblocks at work, school or with life in general due to a hidden disability (people seem to have attitude when they cannot see someone's disability) take heart, you aren't alone.  You must work extra hard and be very creative to get past those roadblocks and move ahead in life.  Many times it will be used to benefit those who come after you.  Ah, but you say "it shouldn't be this way and I am tired of always breaking through barriers".  You are right, many things in life "shouldn't be this way", yet they are.  Take mental and physical breaks when you need them, then regain strength and determination!  You are making more of a difference than you know just by being you and facing life's challenges with grace, courage and tenacity! 

May 14th
  Today I begin the less than two week countdown to my permanent implant surgery.
Not only is today that marker, it is also my mother's birthday! Happy Birthday Mom!
  Once I begin the preop process, I will change the name of this blog and continue to add to this blog.
  Have a wonderful day everyone!

May 24th
  The day of surgery. I arrived at Scripps Green Hospital at 0830 and surgery was actually performed 1130. I was not covered for an overnight stay and did stay in recovery for a long time. According to my husband it was around 6.5 hours before I woke and stated that I wanted to go home.
  During this time my St Jude Medical rep, Bryan came in and set two of my programs. I vaguely remember this as I was so out of it. I have reviewed all of the material which was left for me about my new stimulator and it is very organized and that is a good thing!

The first two days were pretty painful as is with any major surgery. Day 3 I was up and showering with the help of my husband and I will need that help until my sutures are out of the thoracic area of my spine. That should be this coming Friday, June 1st.

May 28th, Memorial Day
   I am feeling somewhat better yet am careful not to over do things as this is a time where that can happen. I am taking pain meds and not allowing the pain to get ahead of me. I keep focused on life down the road and being able to walking a 5K once again without radiating pain during a walk. I no longer run 5Ks and also have not been able to even walk one in over a year without pain.  I am hopeful for the future and thankful to God for all the progress and support thus far.

June 6th
  Well, it has been a while since I was here.  In the time I was AWOL, I celebrated 50 years  of life with my family. My husband, daughters, son in law, grandson  went to Pehoe's in Coronado for late lunch. We came back home (and I, back to my recliner as the trip had taken a bit more effort than expected) for some cake and the NHL playoff game. It was low key as this is the way I wanted to celebrate if we couldn't take the whole family to Disneyland!     That will have to wait until the Fall.

  My medication intake has reduced itself dramatically as I am healing steadily and thankful for such progress. I am very blessed to have a God and family who love me so. My dear husband has truly borne the bulk of our shared responsibilities on top of his own. He has expressed his fatigue while never complaining about the extra work to which  he has so willingly stepped up on my behalf.
  I am doing a little bit more each day, yet taking it easy and still spending a lot of time in the recliner either reading or watching movies or nodding off!
  With great thankfulness I am healing, thinking of the wonderful way my needs were met through my medical network, the doctors and technicians within, the fact that I have a job which will help pay off my share of these medical bills (yes, even with insurance, it is still a tidy sum...yikes) and the support of family.

  My grandson Jackson asks me every morning if my back is better and I tell him it is better than the day before. He has seen the scars (we still call them my stitches) and he understands how to be careful with Nana. I play board games with him and we watch his movies together while snuggling even if I cannot be physically active with him at this moment. I remind him that when I am all better I will be able to dance with him and play soccer too! Something to give him hope and also for myself.

 I will try to do better at getting back here to blog and post some pictures of my new bionic toys! I feel like Jamie Sommers and can't wait to outrun our cats! (ok, that is wishful thinking but Jamie could!)


  The bionic control! This is the SCS control, I can choose from 12 programs that all feel a bit different from the other or are on a timer. Wonderful for night time to conserve the battery's juice!

  Here is the whole recharging kit. Belt, charger, paddle to seek and find my IPG (the internal battery device) and instructions! Haven't used this yet. I was told that I will most likely use it once every week or week and a half as I have the smallest IPG device the Eon mini. As you can see in the picture below, it is a rather small power source.


  I will attach this to the belt for about an hour and wear it around the house in order to recharge my battery!
  Can you hear that bionic woman noise?????? Bionic Woman

June 7th
  Had a nice day today. I was able to get out with my daughter and grandson to the car wash, (this can be exciting when you are housebound and cannot drive!) lunch with the other set of grandparents and back home. I have taken two 5mg percocet, so on the whole, my medication strength and frequency of intake has decreased since my surgery date exactly two weeks ago.
  I still have 10 more days to heal before returning to work. I must make the most of these days and truly give my body what it needs in order to function once back to work. I rest and am trying to ease back in to activity slowly by doing light housework and walking on our cul de sac every other day.  I am not willing to over do and set myself back.  These first few weeks are very important to get good scarring in place to hold the paddle leads tight into the epidural area so there is no lead migration.


  The lead in the linked picture is a TriPole paddle lead, which is the type implanted into my dural space.
  While it is early and I am only 2 weeks post-op, I can say that this lead has been giving me great coverage and I have no complaints!

June 8th
  The news I just received outshines any news about my SCS device. My daughter and her husband are having a boy!  We have been waiting for the news and now we will have two wonderful grandsons in our life. I sit here and am so grateful and excited to meet this new grandchild. So many blessings in this life.

June 12th
  Today I still have some pain on the right side above my IPG area and as I am right side dominant, I believe I have done too much over the past 2 days.  I am at that critical point where I feel well, while still having some pain, but am in a position where I am prone to do too much. This is the point where any injury or surgery   patient must take care to continue healing.

  I do plan on testing out my driving ability this week as I go back to work on Monday. I will make sure to turn my bionics off while driving and back on once parked. This is the beauty of the magnet which accompanies my device. Just like with a pacemaker for the heart, my magnet will turn off my device with one wave over the IPG and turn it back on at the same level, with a gradual increase in intensity with another wave over the IPG. Ingenious! I have used it once, it truly works and is very convenient.
   I continue to get help, albeit less as I , like any toddler, wants to try it by myself! If an activity doesn't involve bending, lifting more than 5lbs or twisting, I  get my EZ reach grabber and go for it! If I just cannot figure out a way to get the job done, I cry uncle and ask for help.
  This morning while using my grabber to get a package of blueberries from the fruit drawer in the refrigerator, I managed to lose grip on the box and it hit the floor. Blueberries everywhere! Thank goodness my floors were just mopped and I was able to use that good ole EZ reach to get the stray berries into a bowl to be washed. I did however, stare at that pile of berries on my floor and sigh, just one more thing that slows down a spinal post op patient.  Many people take for granted the ability to just grab something off the floor, reach high overhead or even be able to open a car door without compromising their condition. It is during these healing times I am reminded of frailty, frustration while conducting activities of daily living (ADLs) and the enjoyment of simple things in life. I still fear being left alone in a crowd without the shielding of my husband from a stray toddler who is running in my direction or an adult who just isn't paying attention and might bump me. This too shall pass, but it will take time.

June 17th
  I am waiting to find out of my neurosurgeon has released me to go back to work tomorrow. If so, I am going in and working as tolerated. It has been nice being home recovering. I enjoyed greatly just chillaxing with my grandson, in our big recliner and watching cartoons in the morning. He have great conversations and I will miss this dearly. I still have some pain and do wear out, yet I find a way to keep going. I have found the magnet that came with the SCS to be a wonderful convenience now that I have begun driving. My MD's instructions were to turn off my stim while driving and I am following his instructions the very best I can. This magnet sure makes it easy! My pain medication has greatly reduced each day and I am thankful for this. I hope to get off of it completely very soon!
  That is about it for now. To all the dads and grandpa's out there, Happy Father's Day!

June 18th
  I am still at home, unable to get a release to work notification sent to my place of employment. I am trying and wont give up! I dont want to use up all of my leave and would like to have a reserve upon returning to work. So, I drove to Target and picked up a few things, careful to keep them light and up in the seat area of the cart as I cannot bend to take anything out of the cart. While shopping, one item fell to the floor, I just stared at it and scooted it to the display base, nothing was soiled so I shrugged my shoulders and strolled off! What was I to do? No employee was around and my EZ reach was at home. Another one of those moments where in public assistance would have been nice. That is not always a reality and we must find ways to cope and move on, it isn't life and death.

June 19th
  I went back to work today. I worked 6 hours and needed to go home to rest, take some medication and ice my surgical sites. It was good to see my coworkers and get caught up and some of my work. Over 300 emails and most did not need a response, thank goodness! Even sitting in an ergo chair with my pillow was more taxing than being at home doing light chores and taking breaks. This just affirms that there is no place like home!  As I lay here updating this blog, I am thankful that I do have a great support system and thankful for my family and the care they are giving to me. It is hard to be a receiver of care, when I am a person who works full time, goes to school and keeps up a home. I am the caregiver not the receiver! Well, that is how my mind works, but my body is not cooperating with that thought, so I must readjust my thinking. I dislike asking for help, yet it has become a daily thing. I will go back tomorrow and try to pull at least 7 hours if not 8, That is the goal and may not be the reality, we shall see.

June 21
  I was able to work 8 hours on my second and third day back! I am a bit tired, but not wiped out and as sore as the first day back. That is a good sign. We are even planning a trip to the Del Mar Fair next week. I am ambitious, but will also take it easy there. A lot of rest breaks.
  I have my follow up with my neurosurgeon on Monday and will know more about how well I am healing, what my next steps are and if any activity can be increased or changed then,
  Currently I am working with my grad school on allowing me to delay a Fall internship which will begin in August. This creates some problems with my program funding and having to delay the actual program. When I speak of uphill battles, this is just one more that makes it hard for those who appear very healthy and yet do have limitations no one can see or understand unless they have walked the same road. So I move ahead and give everyone the documentation they need in order for me to have the "reasonable accommodation" that will allow me to complete my MSW.

June 28th
  I have worked almost 2 full weeks and have been released from the neurosurgeon's care unless I need to see him. I am now back in the hands of my pain management MD and my St Jude representative.
  I have been reprogrammed two times and now have 8 programs from which to choose.
  I worked a little over 8 hours today and while I am still dealing with some surgical pain, that increased it a bit more than usual. My pain medication has reduced way down and I am thankful for this.
  I am very pleased with my outcome thus far and am thinking and praying about offering to be an ambassador for the St. Jude company in the neuromodulation area. I have yet to commit to this and will make a decision when I am sure it is what I want to do.
  We are looking forward to taking our grandson to the County Fair this weekend and while the others ride the rides at the fair, I will be sitting, watching and taking pictures. Frequent rest breaks are in order for this year's trip to the fair! I may post a picture here afterward so you can see there is life 5 weeks post op!

June 29th
  Why is it when people see another person's scar, they say "that's not a bad scar, doesn't look bad at all."  Perhaps because it is my Frankenback and not theirs? A few friends and coworkers have seen the scars (not to worry, I dont walk around showing everyone!) and I have heard this multiple times. Makes me wonder at who's back they are looking?

July 7th
  I hope you all had a restful and enjoyable July 4th! This past week I began working on increasing my time during my aerobic work out. While I am still healing and do have some surgical pain still, I am working out on the Precor elliptical trainer as I did prior to my surgery. I have increased from 15 minute sessions to a 25 minute session and hopefully a full 30 each day. I have not been able to work out each day as I did have some pain. I wasn't sure from where this new pain was coming. I finally figured out that the night before I had rolled on to my side during my sleep, which is unusual as I am a pretty quiet sleeper. My whole rib cage area was sore the following day as I was fully on my side, rather than the 3/4 angle with a pillow behind my back. Too much pressure on the thoracic area. I cant say enough, even though I am still healing and not fully out of surgical pain, the implant is wonderful in making life livable once again!
  Today I look forward to seeing the new Disney movie Brave with my grandson and husband. I will take my back pillow and hope for the best when it comes to a long period of sitting.

July 8th
  We had a great time at the  movies with our grandson. He actually sat on my back pillow because I just didnt need it! I highly recommend this Disney movie for any age!
  I have finally taken a picture of my new medical ID bracelet. I had not planned on wearing one until I spoke with my son in law, who is a firefigher and first responder. He confirmed that they actually do look for medical ID on victims.  I gave in and began my search for a non-ugly, non-pharmacy looking bracelet.
  I was able to find one that does not even look like a medical bracelet when being worn. It is made from brushed silver and amethyst beads. See the picture below.
   The actual ID is just a bit heavier and on my wrist rotates underneath.
  You may put your initials on the front and when it flips over, your medical conditions are listed.
   The woman who owns the business is very good at responding, making sure you get your item in good condition and will assist you with any questions you may have.
Here is the company contact information in case you are looking for a medical ID that looks less medical and more like a piece of regular jewelry.

July 25th
  It has been a couple of weeks since I was here and my healing is progressing. I am in the middle stage of healing and at the time where I must  be acutely aware that while I feel much better, I still must not bend twist or lift more than 10 lbs. My pain management MD raised the amount I may lift, but all other restrictions are still in place. 
  I have been exercising on the elliptical trainer for 30 minutes 4 - 5 days a week and doing squats with the stability ball against the wall. This keeps form proper and helps support the spine.
  I am healing well, I still have surgical pain and some nerve burning that radiates from the thoracic area, but that too is slowly going away. The SCS is doing the job for the pain, tingling, numbness and hypersensitivity it is supposed to cover. I pray that this continues.
  Because I have my IPG implanted above my pelvis, I am able to squat and keep a straight back in order to reach things which are lower to the ground. There are times where I will ask for help and I no longer hesitate to do so.
   There are times where I feel as if life's road blocks for someone with a hidden disability (not disabled) is a bit harder because of the lack of visibility. People expect us to function as if we were able bodied and dont have patience for our slower pace, our need to use an elevator when necessary, the fact that "no, I cannot lift that for you or bend down to pick something up for you." That we cannot sit in an uncomfortable place for any length of time, in order to attend the special function or meeting is annoying to others. How about trying to open a heavy door when you can't because you have had an incision and hardware inserted between your shoulder blades? After a morning work meeting, I stood and stared at a door that had no door switch until someone else came and opened it. We aren't whiners, we aren't complaining, we are just trying to heal the best that we can and just because you cant see our scars left over from several surgeries, it doesn't mean we can live up to your expectations.  Please be as patient with us as you are with those who are in a wheelchair or using other visible medical equipment to move around. 
  I was standing at the front counter in my place of work speaking with one of the front desk staff members, one of our patrons came and playfully elbowed me in the back. I was glad it wasn't right on either of my latest areas of invasion, but I didn't hesitate to tell him to take it easy and I shocked him by lifting the hem of my hoodie and showed him my IPG scar. He felt bad and apologized. If this wound had been in a visible place, he would have gingerly gone around me.
  While stating what I have above, I dont want to diminish anyone's disability, I want to bring attention to the fact that there are frustrations for those who appear "normal" or "healthy" to people around them. 
  I will step down from my soap box now...

August 6th
Well after ambitiously walking 3 miles a week ago and being in pain all week (I am only 2 months into my healing) I decided to use my head and went walking at the lake near our home for one mile. I have been able to continue on the elliptical machine during the week and every other day doing squats with a stability ball along the wall in order to keep proper form and be supported. I have also added in some pilates work on the floor in order to keep neutral with my spine. So far so good and no increased pain this week.

I read a post from a member of  a chronic pain support website tonight and thought it poignant. For those who live pretty much pain free or not in pain on a daily basis, this is for you.

1. People with chronic pain seem unreliable (we can't count on ourselves).  When feeling better we promise things (and mean it: when in serious pain, we many not even show up.  Pain people need the "rubber time" (flexible) found in more relaxed cultures.

2. An action or situation may result in pain several hours later, or even the next day.  Delayed pain is confusing to people who have never experienced it. It is common for us.

3. Pain can inhibit listening and other communication skills.  It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room.  The effect of pain on the mind can seem like attention deficit disorder.  You may have to repeat a request, or write things down for a person with chronic pain.  Don't take it personally, or think that they are stupid.

4. The senses can overload while in pain.  For example, noises that wouldn't normally bother you, seem too much.

5. Patience may seem short.  We can't wait in a long line: can't wait for a long drawn out conversation.

6. Don't always ask "how are you" unless your are genuinely prepared to listen, it just points attention inward and we may not want to focus in that direction.

7. Pain can sometimes trigger psychological disabilities (usually very temporary).  When in pain a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over.  An hour later the same job may be quite OK.  It is sane to be depressed occasionally when you hurt.

8. Pain can come on quickly and unexpectedly.  Pain sometimes abates after a short rest.  Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch , a bed, or comfortable chair, is as important as knowing where a bathroom is.  A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed.  A person with chronic pain may not want to go anywhere that has no refuge (eg. no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain.  Your offer of a pillow or a cup of tea can be a really big thing  to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe.  Sometime there is a body-wide feeling of discomfort, with hard to describe pains in the entire back or both legs, but not in one particular spot you can point to.  Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

12. We may not have a good "reason" for the pain.  Medical science is still limited in its understanding of pain.  Many people have pain that is not yet classified by doctors as an officially recognized "disease".  That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.
I hope this helps explain how life is for those who live with chronic pain and if your loved one is this person, again, please be patient and keep these things in mind.

August 16
Today for the first time since my surgery, I sat on a stability ball all day at work. The give of the ball and ability to sit without the back of a chair made the pain much less at the end of my day. I am so glad that I discovered I am able to once again use my ball as a chair. I am still keeping my ergo chair and back pillow close by!

August 29
  Last Friday, August 24th, I celebrated my 3 month point post SCS surgery! For a whole week now I have felt less surgical pain and referred discomfort in my abdomen. I am actually beginning to move better and feel more "normal"!
  I have added some core work to my exercise routine, planks http://exercise.about.com/od/abs/ss/abexercises_10.htm side planks http://sportsmedicine.about.com/od/abdominalcorestrength1/ss/Quick-Core-Workout_2.htm planks http://sportsmedicine.about.com/od/abdominalcorestrength1/ss/Quick-Core-Workout.htm and bridging http://sportsmedicine.about.com/od/abdominalcorestrength1/ss/Quick-Core-Workout_5.htm. This will engage the core muscles while not allowing for a lot of movement that could cause back pain or bending beyond what is reasonable. (there is actually no bending if done correctly)  Before you attempt any of this, please get clearance from your physician and go slowly! If necessary, enlist the services of am experienced, qualified and nationally certified personal fitness professional.
                                                                                                                                                             
April 22 2013
  It has been quite some time since I updated this blog. A lot has transpired since I last added to this information. 
  I was able to complete one class in the Fall toward my graduate studies. As my neurosurgeon did not clear me to do my internship this year, I have been on a leave of absence and plan to return in the Fall.

  I now have another grandson and we get to babysit him often. What a joy!

  Are the aches and pains still present? At times they are more pronounced than others, but like all chronic pain patients, we deal with the lesser pain and manage it. When something that triggers higher levels occurs, we deal with it. Sleep sometimes eludes and many times is sweet.

  I have enjoyed having a fitness and sports management intern working along side with me since January of this year. We now have 4 fitness specialist interns on board as well. I thoroughly enjoy the teaching and facilitating of interns who want to learn and take away more medically based knowledge.

   Not a lot more to say, the biggest event was the birth of my second grandson and all the rest is just icing on the cake. Remember, children are a blessing, no matter how they come to be part of your family!

August 8, 2013
 I have spoken with several people who have either been preparing for a trial or for the surgery of the implant. One thing we all have in common are scars. External and internal as we deal with the issues that accompany physical challenges.  Know that minute by minute, you can depend in God's grace. Jesus has put peace in us. Keep that knowledge with you always.

  Well, this is it for now, I wanted to share this with you. Don't be hard on yourself, you are a warrior and are doing far more than the average person out there. Rest, breathe and take care.

October 23
  It has become necessary to address the cervical degeneration of the C 5/6 disc.  I have my first epidural injection at the office of Dr. Chisholm.  It truly helped with the arm and hand pain I was experiencing.
  I also requested to have some physical therapy for strengthening my core and increasing my range of motion.  I was referred by Dr. Chisholm to Pain Care of San Diego, in order to see Dr. Danny Song who is the office D.C. and P. T, A. ( Doctor of Chiropractic and Physical Therapy Assistant)
  
November 2013
Upon arriving to my first visit, I was evaluated by Dr. Acosta, the office D. P. T, (Doctor of Physical Therapy)
  With the specialized strength training machines for the body's core, the gentle manipulation and muscle work each exercise session, I have completed my sessions this very day, the 16th of January, 2014.
   I will continue on with a home/gym program and see Dr. Song once a month for fine tuning as I have some special conditions beyond the fusions and SCS implant.
   The most wonderful thing is that this office is well equipped and trusted fully by my PM M.D. to complete the course of  physical therapy without lead migration or any disruptions of the scar tissues holding the device in place.  I am very thankful for an office such as this, everyone is kind, knowledgeable and provide excellent care for their patients.  
I was evaluated and had completed my physical therapy mid-January. Now I go once a month or earlier if needed for a "tune up".
Below are some images of the facility.

 This equipment keeps the body at 90 degrees in the hips and knees. By doing this, the targeted area is truly isolated and is strengthened. Range of motion is dependent on the patient's condition. For an SCS patient and also those with lumbar fusions, this is an important factor.

I gave my permission for the picture below which was taken during one of my appointments. I think the hardest thing for Dr, Song, when working with me,  was not having me push too much too soon.
Things are going well and I am keeping up with my strength training as prescribed, as well as the exercise I was already doing. 
It was much easier to get back to dynamic exercise for the trunk area after the fusions, than it has been post SCS implant. Knowing that there was an electronic device implanted next to the spinal cord as well as the wiring that connected to the implanted IPG, I was very cautious about movement.  All my exercise had been isometric and static. I gained muscle strength fairly fast and am still working on the fact that the left side (mostly the obliques) are not firing as the right side does.  In my doctor's own words, " your spine  has been tinkered with a lot and it will take time."  Time and consistent work are key to waking up those muscle fibers and get them  firing again!