Affirmation Thursday (and Pain update)

(First, before I start...is anyone else "enjoying" the new OS Lion for Mac...where if you don't watch your finger on the mouse, your entire page will just go flying off to the right and disappear?  Horizontal scrolling.....lovely......AGH!  lol)

Okey dokey.....maybe I should have titled this, "Keeping It Real".....I decided to share more details because several have written and upon learning, understood in a deeper way....

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Am I the only girl who likes to control timelines?  Oh my....I truly am doing SO much better than my entire life before, but sometimes I have to stop and realize:  "Hey, I am NOT in control of this".

My favorite affirmations this week are:

I give thanks for the Divinely planned journey under Divinely planned conditions with the Divinely planned supply.

~~~

Adverse appearances work for my good, for God utilizes every person and every situation to bring to me my heart's desire.  "Hindrances are friendly" and obstacles spring boards!

I now jump into my good!

~~~

So, my pain and medication withdrawal update:

7 short weeks ago, I asked my doctor to wean off ALL my pain medications.  Rather than be vague, I will straight up tell you that I was on 300mg of a long-acting pain medication.  Three HUNDRED milligrams.  (You can click on the chronic pain, nerve damage, and spinal cord stimulator links to the right to read all about my diagnoses, conditions, medical test results, etc.)  If you have snacks and drinks, you can read the So What Happened To Me full story....Suffice it to say, there is plenty of medical proof for the medical blessings I have been given.

In early June, my pain lifted  - you can read that story HERE.   I went from 24/7 burning/searing pain to feeling amazing.  In seconds flat.  It was definitely a God-thing.

Now, 7 weeks is super fast and yet I was doing great...my first drop in dose was 100mg and I had 3 hours of restless legs and that was the sum total of withdrawal.  I was so encouraged (after having been warned I may feel like dying...).

At the outset, I wondered if doing so at this time was the smartest idea, as we typically go to Dallas sometime in June or July and that was going to drastically change my physical situation (8+ hour car rides both ways..).  I held steady on the current dosage while gone, but dropped again in dosage the day we drove home.  Ack.

As I hit 60 mg a day, I started to feel it.  At that point, I was on 30 mg, every 12 hours.  When I went to ONE PILL A DAY, 3omg total, I was putting on that smile but the behind the scenes reality wasn't pretty.  The first 3 days of each drop in dose, I would "feel it" but then my body would adjust and I'd have 3-4 days of feeling good before the next drop.

Until last Sunday I went to NO more medication (except what is called "BT - breakthrough meds, of which I am allowed 2 a day.).......

Well, I will just say straight up - Oh My Goodness.  My wonderful, LITERAL husband just stared at me with so much compassion but a huge question:

Why would a girl who was just walking 12 miles a week and just got her entire life back DO THIS TO HERSELF?  

I had to explain to him, again, the realities of being a pain patient.  (If you are a pain patient, you already know....)

The United States is having a war on pain meds.  Because of abuse and addition, ALL legitimate patients NEEDING these meds are being attacked.  It is humiliating to go to ANY doctor and have to admit being on these meds because they DO NOT WANT YOU AS A PATIENT.  Why?  We are ALL seen as "drug seekers".  (There are many "patients" who lie to get the meds, to promptly turn around the sell them.  Some for evil motives, others to simply pay their mortgage.)  But nevertheless, the nurses and docs at these clinics are TRAINED to be on the lookout for abuse and lies.

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And I was tired of it.  I have wires and leads in my spinal fluid, for goodness sakes...that doesn't "PROVE" I am not lying?  Answer - it does NOT.

To start off with, most pain patients are required to sign a contract stating that they will get NO other pain-related meds from any doctor unless in an emergency situation.  (I don't have a problem with this - just wanted to add this for those that don't know how serious it is...)

I was tired of being drug-tested 3+ times a year.  (Sometimes with stick tests in office and other times with it being mailed off.)  

WHY drug test me?  To make SURE I have the meds I am prescribed IN MY SYSTEM.   (Whereas, most drug tests are used to prove there AREN'T drugs in your system.)  Isn't that a shock?  To prove I'm not selling them.

(Willingly submitting for an employment drug test feels entirely different, btw.)  Knowing that any minute, any single thing you do or say could get you "kicked out" of the only place that helps you live your life.....


While I am very thankful there are doctors willing to put up with this mess, I wish there was a better system.  I'm personally in favor of a national database that shows what and where...to stop "doc shopping".

I just wanted a different life.  To be perfectly honest.  I wanted to go to EVERY doctor I have and happily announce what I had done.  That I was FREE.

So.  I have had tears this week, with the return of some pain.  

Am I proud of myself for dropping 300mg in 7 weeks?  ABSOLUTELY.  

But why more pain?

Well...to revisit the beginning of this post....I am NOT in control of the timeline.  Duh, Cheri.  Who am I to claim it will be complete in 7 weeks?  Silly silly Cheri.

Today, I had my pain appointment.  And guess what?  I was drug-tested to see if I am now on marijuana for pain relief (illegal in my state and never prescribed) because WHO just says, "I want to be off pain meds?"  This was a red flag.  I am serious.

GRRRR....

I passed the drug test(S)......Duh....and they then proceeded with my appointment.  Because I react extremely negatively to any "nerve" medications (which are actually seizure medications mostly)...I have gone back on a tiny dose of pain medication.....45 mg a day.   And we are not shelving the plans to get off again.

Guess what the doctor said?  Getting off that much meds in that short of time likely has thrown my body in to sort of a "shock".  Not a "dead in a minute" sort of shock, but just too much, too soon.  That encouraged me. I plan to get my sea legs back and work on my MIND.....my affirmations....

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I KNOW why the pain returned......there is another lesson for me to learn.  And I'm up for it....pain is a nice motivator.  :)

As my beloved friend Barbara said:  "As it says in the Bible, 

 "It Came........to PASS." 

Most people say it as one thing..............it CAME to PASS.....

But really....say this with the pauses....

It Came.........................To Pass.

So, while my journey has hills and valley, it IS Divinely planned.

Oh, and one more thing.  I sadly discovered that one thing that caused a massive fire BLAST in pain was drinking/eating sugary food items.  AGH!!!  So, on top of everything else, I have given up 90% of the sugar in my life.  Woo Hoo!!  Sugar is not healthy, anyway...but I didn't know if I could ever do it.  Fire in the butt sure helped that.  (BTW, my blood test results are not diabetes or pre-diabetes related......a former holistic-minded MD told me that SUGAR is the number one enemy of pain.  She cured herself of Fibromyalgia after everything she knew about medical science failed her.  This began her holistic journey and while she still can and does treat medically, she STARTS with food and things we ingest, every single patient.  She said it got her escorted out of a few Fibromyalgia meetings, as almost any pain patient will tell you.....sugar is one thing that makes us happy when nothing else seems to be working.)

I hope I covered everything...let me know if you have any other questions....

Health Update

I am doing GREAT!  More than great.....just blessed.


Since I last wrote HERE and HERE about the pain lifting, I have:


1.  Continued to walk 2 miles 3-4 times a week at the local park with hubs and our larger dog...it is an asphalt trail around lakes, up and down hills.....fun!


2.  Am in the process of getting off ALL associated medications and as we speak, am down a full 1/3 in dose.  The medication I was given to help with any effects hasn't been needed...I have taken ONE (and I was allowed  2 a day AND told to prepare for the worse flu of my life.  Didn't happen.  Just a little tiredness for a few days......walking helped that!)  I will decrease a 1/3 every two weeks....so in 6 weeks or less, I will be MEDICATION FREE!!!!!!!!  This alone is a major answered prayer in my life.  My gift to myself......


3.  Ended up getting 7 free facials to help my face heal from the spa incident.....and had my last one yesterday.  Boy do facials feel good and the associated massage of the neck, head and  face.....


4.  My Spinal Cord Stimulator remote (the part that allows me to control the stimulation....)continued to be on the fritz...and just TODAY did I get a replacement part that actually worked.  It has been a comedy of errors that most would not believe...and frankly, had I BEEN in pain, I would have been committed by now.  God is amazing though, and my SCS didn't break until the day my pain lifted.  How cool is that???  (I ended up having to record with my iphone the "acting up" since in the presence of docs and programmers, it worked fine. Just like when a female takes a car to get services and it doesn't act up.  Ugh. ) Never to be disbelieved, I happily forwarded 4 videos, PROVING the trouble.  Don't underestimate a driven woman. Even though I don't need the SCS at this moment, I do prefer it to be working.....since it is implanted and all....that just sounds like a good idea....

Can you see the problem with the first wand they sent me?  The old one is on the left.......

When I called to explain the problem (as the guy on the other end had an accent and was not easily understanding me....I kept saying, "You sent me a GIRL, and I need a BOY wand."  I can only imagine what he was thinking, but to ME, it seemed the best way to describe it.  lol  This is the part I put on my upper hip and communicate how much stimulation I want through the remote...


All in all, I feel FABULOUS.  Just got back from going to the grocery store myself...got the groceries, put them in and out of the cart....carried to the car.......Hubs will be SHOCKED when he gets home.  Edit - hubs just got home and IS shocked and said, "Wow, when was the last time you did THAT!  You should put that on your blog" and I told him I already was....hee hee....  :)


God answers prayers!!!!!!!  Don't give up.....never give up.  Be careful what you focus on.....because what we focus on....grows.  Believe the pain will lift.  Dream as if it already has.....Trust me......with my medical "proof"...this can only be explained by "it's a God thing".

I Forgave Myself.....

I was ready.  I was ready to forgive.  I was ready to open my mind to the truth.  I wasn't ready before.  Now was the time.


This was the key?  I've known since day one that my pain was related to what was happening in  my life when it first appeared...everything in my life I knew to be true was turned upside down.  Struggles and trials I wished on no one were in my life.....and I felt powerless.  
The details are unimportant - my reaction WAS.  (For those new to my blog, see on the side bar links to Chronic Pain, Nerve Damage, So What Happened To Me, etc.  Basically, I was injured in 2005, had 3 back surgeries in 12 months and was left with diagnosed severe nerve damage and was finally given an implanted spinal cord stimulator (scs) kind of like a pacemaker for nerves...with a remote control.....and I buzz on the inside like a massage chair rather than feeling the full intensity of the searing nerve pain.  I spent much of my time reclined...keeping the pressure off my S1 nerves.)


No matter what I did to help the situation, nothing changed.  And being such a perfectionist and NOT wanting what WAS happening, I collapsed.  In pain.  More appropriately, denial.  I went in to denial. My conscious mind was overwhelmed and I just collapsed.

However, from day one, I KNEW I would be healed.  Despite my medical records, despite the very real MRI's and CT Scans that show what they show.....diagnosis of decimated nerves....despite the surgeons coming out and telling Andy "Holy moly, how was she even walking..."surgeries that filled my back with metal...and then spinal cord stimulation.....

My "high pain tolerance" that I used to be proud of?  It was no friend of mine.

Then came the subject of social security disability.  Every one told me to file for disability.  Because I had only worked a few years after having been a stay at home mom (SAHM) for many years, I only had a certain amount of time to qualify.  And we could really use the money.  After years spent reclined, who wouldn't?  I wouldn't.  My thinking was, I would be telling the world I will NOT be healed.  It would make it REAL.

Family and friends were perplexed, noticing it WAS real already.  lol  But I have this side of my personality...I call it tenaciousness....I had faith.  Without it, I couldn't imagine where my mind might have gone.  As you can only imagine, the experience of 24/7 burning/searing sensation is ..............something no one should experience.

4 weeks ago, I saw a book online and ordered it immediately:

Opening the Cage of Pain with EFT by Rue Anne Hass.

Having explored and used EFT (Tapping) in the past, I was very intrigued. EFT uses acupressure points on the face, neck, collarbone and hands to relieve issues.   In this book, she states:

"I believe that chronic pain can emerge from years of hiding, holding back, caging or repressing our deepest self-expression.  Chronic pain is the body's expression of emotional and spiritual pain.  Pain gets our attention!  It is calling us to free our deep spirit."

I started saying to myself quotes in this book:

"Even though I get overwhelmed, but I swallow my real feelings, soldier on, and tough it out, I realize that is making me sick.  I love and accept who I really am.  I honor my deep inner strength, my truth and my goodness."

~~~~~~~~~~~~~~

"Even though my heart feels heavy and tight and sad, I honor myself for how hard this has been, I understand and I even forgive myself.  I was doing the best I could.  I choose to love and appreciate this powerful, world changing soul quality I have been so blessed with." 

~~~~~~~~~~~~~~
So, it did not surprise me when I received an email from Barbara Rogers,  the owner of Simply Divine Botanicals online asking to speak directly with me (she had seen my posts with my testimonials of her products).....she called an hour after receiving my number.

Her first question:
"Cheri, when will you be ready to forgive yourself?"

She explained what I already knew....that pain (lingering pain, not "just had an accident acute pain") stems from grief and shame.  Pain comes in to our lives to give us a message.

I have ALWAYS believed this.  ALWAYS.

I thought I HAD done all the forgiving needed.  I forgave others involved.  But guess what?

I had NOT forgiven myself.

I set about immediately to do so....meanwhile, she recommended these books:

The Game of Life and How to Play It by Florence Scovel Shinn

and

Heal Your Body A-Z by Louise Hay

In this book, it explains that


Low back pain: Fear of money, lack of financial support.

DING DING DING

For this, one should repeat:  "I trust all the processes of life.  All I need is always taken care of.  I am safe."

Sciatica:   Being hypocritical.  Fear of money and the future.


For this, one should repeat:  "I move into my greater good.  My good is everywhere, and I am secure and safe."

See, at the exact moment of pain onset, I had started a new career, training new real estate agents to believe in themselves, be all they could be.....that the sky is the limit.  Yet, I could not affect change in my own life.  I could not convince family members to do the same.  I felt like a hypocrite.

In the book Game of Life....it quotes Jesus and the Bible throughout.  For example:

"Keep thy heart with all diligence; for out of it [are] the issues of life."
King James Version  Proverbs 4:23


Pain served a purpose in my life.....it took me from being a mile a minute, hyper girl to someone who learned to be PRESENT.  I had nothing else to do BUT learn to be present.

I consider the last 6 years to be a learning experience for me.  I am such a different person.  I value so much more.  For one, I value my mobility.

Let me share with you some interesting things since the pain lifted 2 weeks ago:

The DAY of the phone call and my pain lifted, we were driving down the road my SCS remote beeped at me from my purse. It never does this.  Long story short, it was BROKEN.  I hadn't turned myself "up" for the day and now, no stimulation.

Well....if my pain is gone, I don't NEED stimulation, right?   (Hello God, I see you....I feel you...you got my attention!!)

It is now 15 days and I have still not had my remote "fixed"....despite the promise of a 2 day turnaround.  More proof the pain is gone, eh?

Andy and I have been walking together at the park....on a 2 mile trail....with hills and valleys.....and I got new tennis shoes that simulate sand and my hips/legs/calves are getting quite the workout.

We have gone down to the condo weight room and lifted weights.  ME!!!!!!  And I bounced out of bed the next day....no "recovery" period.

My greatest lessons so far:

Our thoughts are very powerful.

Our words are MORE powerful.

What we actually write?  Becomes law in our life.  

I am in the process of going back to all my profiles and changing what I wrote and I am watching how I refer t0 my situation.  When something happens today that I wasn't expecting, I ask myself, "God, for what blessing has this occurred?"

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I am whole.  I am healed.  I am forgiven.

I am now to go fulfill why I was put on this earth.........my intense learning session has completed and I will never be the same.  I will forever grateful for this experience.  I truly will.  Onward now to learn what is next!

Starting now, I will use this story to help others.....and I can't wait.


P.S.  The science behind our thoughts and illness is solid.  I will be sharing a post soon showing more of the scientific background on this subject.  Just as we can make ourselves ill we can heal ourselves as well.  Dr. Caroline Leaf, a cognitive Neuroscientist,  wrote the book, "Who Switched Off My Brain" which I read last summer.  AMAZING.  It IS scientifically proven......

Taking a Risk

Over at The Nester's blog, she asked today about risk taking.  If anyone feels like they have taken a risk, to post about it and join her party.  It stopped me in my tracks as I realized I DID take a risk.  

A big one.

Having been through 3 lumbar back surgeries in 12 months and still suffering immense pain, in hindsight it WAS a huge risk to move forward with the Spinal Cord Stimulator (SCS) trial and surgery.  Putting wires and leads in my spinal fluid?  Having a battery in my buttock?  Having wires threaded down my back, mid-back to hips?  Being told that a 50% reduction in pain would be considered a success.  50%?  

But you know what, 50% is a LOT of pain relief, when you suffer the pain I endure.  I have permanent, severe nerve damage.  After the 3rd surgery that DID stabilize my back, my nerves were left permanently damaged.  From what or when, no one will ever know.  But the S1 nerves in both legs burn ALL DAY and ALL NIGHT long.  Searing is a good word.  24/7.   And on really bad days, I get what I call "lightning strike" pain - a pain that will shoot through my hips and out my toes, down my entire leg.  Sometimes it is just a flash.  Other times, it stays a while.  Either way, it takes my breath away and if I were driving, I don't know if I could control the car.  (Reason #1 I rarely drive).  I've never been struck by lightning, but I imagine it would feel something like that.

After many months of suffering, my beloved neurosurgeon recommended I either try the SCS (Spinal Cord Stimulator) or get an implanted pain pump. NO other options.  

I was so scared.

What if it didn't work?

What if something went wrong and I ended up in a wheelchair the rest of my life? (Any time working on the spinal cord is a huge risk.)

But I was nearing zero quality wife and mother at that point......I lived fully reclined 24/7.....shouldn't I do it for them?

What happened during the SCS trial was almost inhumane.  A nightmare of epic proportions.

But at the end of the day, I STILL (even after that trial horror), went forward and trusted my neurosurgeon and trusted God that this WOULD be an answer.  That this WOULD give me some of my life back.

The SCS is like a pacemaker for nerves.  Have you ever sat in a massage chair to get a pedicure, or at a store?  Well, I massage INSIDE my body, 24/7.  JUST LIKE THE MASSAGE CHAIR.  It is the freakiest thing!  

But while my body is massaging, my brain is saying,"What is going on????  Why are we buzzing"?  While my brain is busy trying to figure that out, my burning/searing leg nerve pain isn't getting through at full intensity.  Hence, the relief I experience.  When my brain figures this trick out, we will be up a creek and looking at new options, I suppose.  But so far, so good.

And it did.   I'm not the old Cheri, never will be.  But I can walk longer than 30 minutes.  I can go out to dinner, I can go to the mall, I can go to a movie with my sweety.   I no longer live 24/7 fully reclined and that is a blessing.  My husband got most of his wife back.   He rarely comes home to find me crying.  That is huge.  There is only so much his heart can take.  Nothing more helpless than being a man who can't help his wife.   Little does he know that just letting me lay on his shoulder and cry means the world.

So today, my husband proudly tells people he has a wife with a remote control.  Who wouldn't want that?  lol   I can turn myself up, I can turn myself down.  I have to "charge" myself every few weeks.  I even have fun little tricks I can do that most SCS users don't enjoy.  God gave me a few little extra gifts, and for that I am forever grateful.

At the end of the day, I had to choose to trust a 4th surgeon to help me, had to trust that he wouldn't further harm me. 

He helped me.  An answered prayer.

I thank God for Spinal Cord Stimulation.

I thank God for technically excellent neurosurgeons.

I thank God for the most supportive, nurturing husband in the world.

I thank God for supportive family and friends.

I thank God for people who propped me up when I was ready to give up.

And I thank God for what I do still have. 

I am a lucky girl.

I try hard to make sure no one knows I suffer if they see me from a distance.  Only by watching closely will you notice the sparkle missing from my eyes, or you might see me stumble as I try to pretend I can still feel my feet and my balance is normal.  Ever the actress.

I pray you never experience pain like this.  If you do or if you know someone who does, please tell them about Spinal Cord Stimulation.  I'm surprised at how many people haven't heard of it.  It is designed for nerve damage pain in particular.  

I share my story on this blog because there are so many pain sufferers home-bound.  Finding others who understand, who truly understand.....is priceless.  I love the new friends and emails I receive from new friends I meet through my story.

So What Happened To Me?

Other links on the right hand:  Chronic Pain, Intractable Pain, Nerve Damage and Spinal Cord Stimulation.

Faith is powerful.

Keeping It Real

One of those weeks where I’m reciting the Serenity Prayer over and over and over…..

GOD
Grant me the SERENITY
To accept the things
I cannot change

The COURAGE
To change the things I can

And the WISDOM to know the difference

Credit - Charlie Murdach

 

Central Pain -

It can be a steady, sometimes deep burning, aching, cutting, tearing sensation CPS (Central Pain Syndrome) may be mixed with sudden, excruciating shots of pain. It is often mixed with other distracting sensations like cold, tingling, a "pins and needles" effect, a ballooning sensation, throbbing, and the feeling of a dental probe on a raw nerve.

Intense skin reactions can accompany these symptoms, such as burning, stretching, tightness, itching, or a crawling feeling that can be irritated by any light touch, sometimes just the feel of cloth on skin, which can making dressing an ordeal. Sometimes the touch of a loved one, or family member, in fun, or love, may often be a way to overwhelm the brain with the pain from CPS.

This unwelcome guest joined a party already in progress.  

Attendees include:

Massive nerve pain flare hips to toes, busting through the spinal cord stimulator like it isn’t even there.

Mid-back (thoracic) spasms, arthritic in nature, likely triggered by rain.

Low back muscle burning, deep deep pain, pain in joints.

And now this.  Central Pain.  Again.   I had this once before and when I survived it then, prayed it was a fluke occurrence.  Guess not.

How people live with this every day defies my understanding.  Folks say that about my regular pain, but I had gotten to a mental place where I could just survive.  Not sure about this.

Reclined, frozen as any movement feels like a blow torch on my skin…….my smile is faint, my mood less than stellar, my patience thin……….but the blessing of an amazing husband whose heart breaks when he sees me like this.   Don’t know how I’d do it without him.

Love him.  So much.  Love how he tenderly pulled me out of bed on the mid-back spasm entrance.  Love how he stroked my hair as I buried my face in his chest, only having made it to sitting position, yet to stand and endure the full force of the spasms.  Love how he tenderly hugs me, keeping his hands above my bra strap, being careful not to even brush his fingers across my lower back ribs to hips. 

 

If I didn’t smile, I shudder to think what state I might be in.  Smiling ministry can also be for yourself.  Never knew that until now. 

 

22 Things You May Not Know About Me

22 Things About My Invisible Illness You May Not Know

1. The illness I live with is:  Permanent Severe S1 Nerve Pain, Failed Back Syndrome and intermittent flares of (suspected) Central Pain Syndrome.  Have an implanted Spinal Cord Stimulator.

2. I was diagnosed with it in the year: 2008

3. But I had symptoms since: 2005 (Had 3 surgeries at L5-S1 in 12 months.)

4. The biggest adjustment I’ve had to make is: Learning to function/think/talk with a constant pain override - like a train whistle constantly blaring in your ear, never stopping.   To understand, put a tack in each buttock, both legs and both calves and tape them down.  Imagine occasionally stepping on a tack (to mimic the shooting/lightning strike fire pain that comes intermittently). Now function.  Ignore that pain as best you can.

5. Most people assume: I am fine because I'm always smiling.

6. The hardest part about mornings are: Waking up crying in pain.

7. My favorite medical TV show is: House, but I don't watch it anymore.  House suffers from horrible nerve pain as I do, but the way they portray him is somewhat unrealistic.  I understand why he is cranky.

8. A gadget I couldn’t live without is: Computer.  Distraction is my greatest weapon against the pain.

9. The hardest part about nights are: Besides actually falling asleep unless delirious, it is knowing that despite my best efforts, I will still wake up wanting to cry or actually crying.

10. Each day I take 20 -25 pills, supplements & vitamins. (No comments, please)  Vitamin D greatly helps my pain, for example.

11. Regarding alternative treatments I: have tried acupuncture, acupressure, EFT, CBT therapy, Massage, and more.  I actually never stop looking for something to help.

12. If I had to choose between an invisible illness or visible I would choose: Visible.  Less to explain.

13. Regarding working and career:  Never again.  Ironically, if I hadn't gotten 3 jobs during a time of uncertainty, this might never have happened to me. 

14. People would be surprised to know: that I am not exaggerating when I say that the nerve pain is 24/7 burning, SEARING pain.  They see me smile and think, "It can't be that bad".  Only my husband sees my tears, anguish and suffering.

15. The hardest thing to accept about my new reality has been: That the pain will really really REALLY never go away.

16. Something I never thought I could do with my illness that I did was:  travel again in a vehicle over 30 minutes.

17. The commercials about my illness: Don't exist.

18. Something I really miss doing since I was diagnosed is: Amusement parks.

19. It was really hard to have to give up: the ability to drive and go where I wanted.  

20. A new hobby I have taken up since my diagnosis is:  Blogging

21. If I could have one day of feeling normal again I would:  Walk barefoot and enjoy the sensations of NORMAL feet touching the ground, grass, pavement, carpet.......

22. My illness has taught me:  You never know what is going on with someone, especially those with "invisible illness".

I missed "National Invisible Illness Week" but wanted to share.

So What Happened To Me? Part 5 - The SCS Trial

Part 1

Part 2

Part 3

Part 4

The SCS Trial

  

I have the ANS/St. Jude Eon Mini.

In a "normal" case, it takes the doctor around 30 minutes to get the long needle inserted, thread the leads up the spinal fluid, position the lead, check with the fluoroscope, and then have the programmer turn on and double check position.  Usually the patient will feel the shots for the lidocaine and then little else.  Possibly pressure, but little pain. 

In my case, what should have been a 30 minute procedure took over 2 hours.   Having had 3 lumbar surgeries prior, I was full of scar tissue and this doctor was unprepared for this.  Instead of 2, 6 LONG epidural needles were inserted inches up my back and then pulled out and reinserted, over and over.   If you have ever had an epidural for a childbirth, you know how far they stick that needle up your back.  Sadly, my husband was just a few rooms down and listened to the entire ordeal.

Leads in spinal canal.

The problem was, as the doc would try to insert the leads, scar tissue was in the way.  As he pushed and pushed trying to get the lead up my back, it pulled and dragged against the scar tissue, which in turn was pulling and dragging on my already damaged nerves.  The pain was indescribable.  I was on the verge of fainting, BEGGING for more numbing medication as the doc had promised.  He thought I was being a pansy, and was irritated with me.  I was crying out, telling him something was pulling horribly, my body was spasming, shaking, jerking, and every time I jerked, he raised his voice.  

The nurses had given me something to bite into, they were trying to hold me down and still, and all this AFTER 5 numbing shots!!  I pleaded with him to stop (when I could talk between gasps) but he felt he was "so close".  One male nurse tried to get the doctor to try something new, but that didn't go over very well.  Just as he would place a lead, it would shift or move out of position.   This procedure is done under fluoroscopy, a type of x-ray, and each time the lead was placed, they would take a look on the fluoroscope, move the lead some more, take another look.  It was tedious.  My scar tissue was causing the leads to have a mind of their own.

My suffering was so great that the programmer actually fainted from having to watch me go through that.  The procedure had to be paused while they tended to her - she HAD to be there to help with the SCS programming.  It gave me a much needed break and nurses wiped all the tears off my face and nose and put a cool cloth on my forehead to help calm me down.  I couldn't even imagine what Andy was thinking at this point.

After getting the left side placed, the doctor started on the right side (I was being given 2 leads for the trial, since I have pain down both legs.)  This side went perfectly.  NO scar tissue in the way.  At this point, the doctor apologized to me when he realized I must have truly been in agony as he realized I didn't flinch a muscle on the other side.  He knew it hurt enough that everyone flinches, but not me on that side.  It was a piece of cake compared to the left side.

The now-revived programmer hooked me up and turned on the stimulation and I felt buzzing in my stomach.  NOT where my pain was.  I needed to buzz down my legs and buttocks in the back.  At this point, the doctor was D.O.N.E. and scared to do anything else.  He promised me that the programmer could "work magic" with her computer and get the buzzing where I needed it.   

Wires Taped Down

Fanny Pack holding battery with cables hanging down.

Trying to be discreet - more of the equipment.  Grooves in my skin were from sitting on the cables.

Remote control for the Trial.

I was taken to another room to recover and I'll be honest - I was in shock.  Utter shock.  I had never experienced such pain and cruelty in my life.

The programmer came in and just sat with tears in her eyes, not knowing what to say to me.  She had never seen such a disaster in all her experience.  She tried to reassure me that he was just trying to finish rather than abort and send me home.  At that point, I wanted to get out of that place and never come back, but I had to finish the programming.  I would later learn that the doctor was not as trained on my particular SCS leads as another brand, and was not inserting the epidural needle at the proper angle.  I guess angle makes all the difference.  Also, had this doctor been aware of the scar tissue, he should have inserted the needles much higher to avoid it.

She gave me about 15 minutes to collect myself and went to get Andy.  Bless his heart, I was so glad to see him but in such bad shape.   I was honestly just sitting there shaking, my eyes wild, trying to process what had just happened to me.   And then in walks that doctor!!!  He came over, put his hands on my shaking legs and asked me "So, have you had prior surgeries?"  WHAT??????????  What did he think those 3 (THREE) huge scars down my back were from?  He left quickly, seeing the state I was in.  I vowed from that day forward he would NEVER touch me again.   Thankfully, there is another anesthesiologist at this pain clinic I can use, since I am under contract with them to not go anywhere else (required).

The programmer, Mandy, came in to start trying different programs to see if she could get my buzzing in the right place - down the backs of my legs.  She had very little success, and she tried for 1.5 hours!  It was exhausting, but the leads were simply in the wrong place.

I was now all taped up, with the leads taped to my back, and the battery pack in a fanny type purse with a belt, and huge cables hanging down.   One wrong move and the leads could be pulled out of position, so I had to be very very careful.  The trial was for 5 days.

I went home broken and wondering how much therapy I would need to get over that experience.  And it didn't even work.  I wasn't buzzing in the right place.

Around 10PM, my phone rang.  It was Mandy, the programmer, telling me she was so upset she had to call the neurosurgeon and tell him what had happened.  He could hardly believe it, but agreed with her that my leads needed to be moved.  This meant I had to go back in and let that doctor pull the leads down a bit, which should be quick and easy.  That took some convincing, as I was not planning on going near that doctor again in my life.  She promised that pulling the leads back down was nothing like pushing them up the spinal fluid.  I agreed.

And the NS said, if that doctor couldn't do it right, HE would get me in a do another trial himself.  (Unheard of for neurosurgeons to do the actual trials.)

I hardly slept that night, just sick about what that doctor might do to me the next day.  Andy did his best to calm me down but he had listened to what I had gone through and he was deeply upset as well.   Well, God himself was intervening, because as soon as they got me on the table and under the fluoroscope, it was discovered that my leads had dropped down 1 inch!!!!  This would normally be a total disaster, but in my case, it was perfect.  That doctor did not touch me again after all!!!  Hallelujah!!  Praise God!

Mandy was now able to start playing with programs again and found some great programs that worked, giving me several options.  It is truly fascinating what all can be done with the programming.  I preferred the constant buzzzzzzzzzzzzzzzzzzzzzz, while others prefer more "concrete pounding" BUZZ   BUZZ   BUZZ  BUZZ.  So many options.  With the remote control, you can turn it up, down, off....so many choices to help you cover the pain at that moment.

Andy and I joyfully went home and set out to try the new device.  We went to the mall, went out to eat, all things we hadn't done in years because that 30 minute window just didn't allow it.  I was in heaven.  My smile those days was something else.  In fact, here is what I called my "pain free smile", as I can see the relief in my eyes from the suffering I had been through for 3 years at this point.  My nerve pain was 24/7 burning, searing pain.

I had the trial in place for 5 days and it wasn't until the 3rd day that I started to be convinced I would like this.  My back had to recover from the trial procedure and that pain had to calm down before I could truly evaluate whether I wanted to move forward with the permanent implant.  Was the implant procedure going to hurt like the trial?  If so, I was NOT going forward.

Mandy promised me it would not.  Mandy, the programmer, represents our local area for the St. Jude brand of SCS and works with the different pain clinics who do the trials, as well as Dr. Feler, my neurosurgeon who would be performing the permanent implant if I moved forward.

For the SCS to be considered successful, it must relieve 50% of the patient's pain.  For me, it did that.  And after much thought, we decided to move forward.  

To my surprise, I was actually crying the day they removed the trial leads.  I had so much pain relief, I could not imagine going back to my normal level of pain and having to wait several weeks for the permanent.  It was December, and we didn't know how fast I could get in.  The trial lead removal did not hurt AT ALL, thank the Lord.  

A word of Caution:  I've had many say it was too bad my doctor did not put me under anesthesia for this trial, and then I wouldn't have suffered so much.  Well, think about it this way.  If that doc was willing to jab and push that much scar tissue while I was awake and shrieking, can you imagine what might have happened had I been asleep?  These docs are pushing lead wires through our spinal fluid.  One wrong move and well......you know how bad it could be.  So, we MUST be sure we have experienced doctors performing these trials AND I recommend being awake.


How else would you be able to tell the doctor that you are buzzing in the right place?  An online friend was put to sleep and woken up to be asked "Do you feel buzzing?"  In her stupor, she said yes.  No one asked her WHERE she felt buzzing.  She had to have 2 trials, as the first one was a waste - the programmer could never get the buzzing in her pain area.  There is just so much "magic" the programmer can do if the leads are placed incorrectly.


We are all wired differently.  For my pain coverage, my leads are down at L2, where normally they are up at T-9 or T-10.  But I refused to get off the table until the buzzing was where I needed it, even though I was upsetting my doctor.  After my trial experience, I was not playing games.  I'll be detailing that procedure in the next post.

As it happened, my permanent SCS had to be delayed because I got very ill with acute pancreatitis and ended up in the hospital for 12 days over Christmas that year.   That was an entire drama all it's own, including an almost anaphylactic allergic reaction to the contrast dye (even with allergy protocol) and hives caused my face and eyes to swell, but thankfully not my throat to a dangerous degree.  Just what I needed.  lol

My next entry will cover the SCS permanent implant and life moving forward.