A Little Deflated....
 

I had the SCS implanted last year (2011) around Thanksgiving after suffering from lower back pain that resulted from an auto accident nine years ago. After all those years of heavy medications just to control the pain to a tolerable level but never completely relieved of it I decided to try this. I was on a fentanyl pain patch, oral morphine and lortab for nine years every single day. I longed to feel normal as I had forgotten what it felt like to not have pain or be on medications.
It has been almost one year since the implant and during the trial it seemed to give me great pain relief however I was severely restricted during that time as well so in my opinion the trial should allow you to do all you normally or WANT to be able to do in order to provide a fair assessment.

For some reason three months after surgery I began to have pain at the surgical site. I thought it probably normal perhaps my body was just becoming used to it. I continued on and kept it to myself. Five months after surgery the pain in my mid back (surgical site) was becoming more intense and there on a daily basis now overshadowing the original reason I had the implant which was pain in my lower back and legs. In July of this year (8 months after surgery) my hands up to my elbows and my feet up to my knees will suddenly go numb and tingle and remain that way for hours. When this happens the pain seems to be less however walking and using my hands is difficult because with the numbness is a low level weakness. I've fallen once during one of these episodes. The longest stint was 9 hours and it disappeared. I cannot pinpoint what brings it on.

A note: when the temporary leads were being pulled out of my spine a pain shot around my left rib. The guy from Boston said it had touched a nerve or something like that. I was on my hands and knees one day on the kitchen floor cleaning up an apple juice spill and when I went to get up I felt a burning in the middle of my back with a sharp pain and at the same moment that same pain around my ribs it's hot, sharp and intense and last for a moment.
Since that day the back pain in my mid back has been constant and unbearable.

I feel like I've just added a new level of pain to myself. For the first few months it was GLORIOUS!!! I was mobile for the first time and could do things I couldn't do before and hadn't done in years!!! I wasn't taking any meds but my pain patch! But it was short lived and it's like allowing a blind man to see for a month or so then going blind again. It's that depressing to watch my mobility and life fly out the window again.

I'm going to have to have it removed as I am back on all the meds and the pain works on my nerves so much that I'm emotional a lot and moody. I don't enjoy my life at this point. I feel like a burden to my family and not able to be a wife to my husband.

Im so tired of hurting of paying a price for doing something that brings me pleasure. AFter the implant my husband and I bought a harley davidson and was able to ride for a couple months then after this happened I haven't sat on the bike since.
My advice is don't rely on the trial to assess whether this device will work for you. You can only go ahead with the main surgery and then see. I don't know if a lead has come loose or what. But now when I USE the stimulator it does nothing for either pain. I feel it working but it doesn't stop the pain.

:(

Hi TK!
 

I am saddened to read of the reversal of your fortunes after receiving the SCS...... Your illustration of feeling as though a blind person at last being able to see for a while only to have blindness remanifest is such a VIVID PICTURE!

I cannot fathom what would have gone wrong, and I am wondering if you have the device removed, the team will be able to forensically demonstrate as removal occurs "what went wrong." You should be provided a complete report, and ask for a recording of the surgery so notes can be transcribed in order to attempt understanding in case you ever were to think in terms of giving it another go. Those notes would be invaluable to a repeat implant team if you try again.

Given my experience with all limbs of my body, I have learned the spinal cord and its descending array of nerves are true miraculous wonders, which, if injured can bring horror to the person wearing that affected body. Mine has been so.

The effect of my SCS for waist down pain through my legs has been a life restorative help since I was able to withdraw from all meds. Later I learned the nerves which serve my arms descend from roots at the C5 through C7 area of the neck. I was in peril us losing complete use of my arms, both of them, plus the "I wanna die" excrutiating pain of the nerve fire and ache from my right fingertips all of the way through my arm to the neck. At last fusion of the levels restored my nerves to the openings whence they are intended to run so my arms were saved.

In this way, I learned different linbs, different nerves..... so, this leads me to wonder about that zap around your ribcage and whether a pin point treatment may be possible with your pain management doc regarding whatever the rep thinks they touched in your thoracic area. I would be asking my pain management doc if it was me, because I know of all the injections I endured, the effort was to pinpoint the nerves causing the ultimate discomfort, and you are experiencing discomfort in spades!!!

If I may, I will pray for you that all of this comes together for good in your life, because you are definitely in need of life helping intervention from on high,
Mark56:hug:zzzzzz:grouphug:

i am so sorry
it seems unfair
at times
i know where pain can
take someone emotionally
please don't give up
do you have a support
team does help
as this place i
have found
informative and captured
caught on


someone who cares

Hello TK!
 

....and WELCOME to the forum! :hug:

Your testimony has me sitting on the edge of my seat with eyes wide open!
I'm SO sorry this is happening to you.
The first thing I want to say is PLEASE don't give up! The way you are describing your pain and hopelessness sounds JUST like me 3 years ago! I completely empathize with you. I too wanted things to just 'end' for me, so that I could cross on over to that 'better' place. It's heartbreaking that this pain brings us down this low. It's like watching our lives fade away as we mentally say goodbye to the wonderful people in our lives and the things we used to be able to enjoy.

My heart just sinks when I read that your doctor referred you back to the manufacturer. (per your post in the top section) This really angers me! :mad: He needs to fess up to his OATH and take immediate notice to what this is doing to you. You obviously have a severe medical issue going on and it's his responsibility to see you through this.

He could at least check to see what's going on (Via Xray or fluoroscopy).
I had pretty bad pain in my lower back also and I just 'knew' that something was wrong. I basically had to insist that I get an xray because no one was comprehending my pain. Sure enuf, one of my leads had come loose and migrated 6 inches down to my lumbar.

Please do whatever it takes to have your doctor take you seriously. No one should have to be suffering like this. :(

Anyway, I'm glad you've found your way to our little forum and I hope you stick around. The support here is absolutely wonderful.

Caring,
Rae
:grouphug:
PS! You are not a burden to your family. Please don't think that you are.
I'm sure your husband loves you deeply and wants nothing more than to be there for you to help you get through this. :hug:

as you nicely put it rae
always have someone
with you an advocate
someone to witness
for your sake
it makes a difference
jot everything down
ask with whom it is
your speaking with
use their name as
you speak to them
that is just my experience
passing on

someone who cares

Yup
 

Names, dates, times, places, facts....... all of the important things. Just as you put it so well, having an advocate along.

Can't add anything to wisdom already well said.
Prayin for TK,
Mark56:hug::grouphug:

7 September Awakening Refreshed
 

Recovering from major surgery involves a good deal of the DEFINITION of the word by which each of us thus blessed is named....... Patient. That quality of allowing the miracle of our bodies to work its process of recovery requires, among other things, adequate REST. This lesson has been repeated ad nauseum in my past seven plus years, yet, it was THIS particular event during which the learning crystallized as reality acknowledged.

Resuming office work as I have part days has drawn deeply from the well of my energy reserves, a well also Required by my body to do the work of healing, of building bone in my neck newly fusing...... and that bone tired weariness sets in demonstrating there IS INDEED A LIMIT to what the recovering patient may do.

Thus, last evening, weary, I retired to bed early for rest, blissful rest, awakening first to share gratitude for God's many messages, then to take up the work of the day to address client needs before I must once more recharge. This feeling of awakening refreshed, swimming in its feeling of daily wholeness, ready for the challenge is definitely one of those blessings we receive. Ahhhhhhhh........... grateful to God. Thankful healing progresses. Happy to know today I am prepared in readiness.

Nice lesson for awakening anew,
Blessed,
Mark56:grouphug:

25 September
 

My blessed stim does its humming thing,
and I want to go, get on a fling,
take my bride and be away,
but the truth is this, pain still in my way.

The arm, it hurts quite a bit even yet
I am patient, hoping this will pass, begone get,
so in two weeks time, I can travel, fly
to New York, and be sworn in to try

Practice there of law for client needs,
and I do this so to help, not out of greed,
but the travel task, if full of hurt,
will be difficult, so in pain I lurk.

Yup,
Mark56:eek:

Oh Mark.....
 

I do hope this pain in your arm subsides soon and that you WILL be able to travel to New York.....OH how I love the Big Apple:D Id move there if I could;)

I wish you the very best and hope it all works out for you


Jackie:hug:

Rhyme thyme
 

So sorry you're still grappling with the annoying pain, Mark. Glad to see, though, that you can still make us smile with your literary quips!

Praying for you,
Jan :hug: