SCS trial Pain, rethinking Permanent Implant
 

Hi! My name is Becky, and I was blessed to find this forum yesterday in my quest for information and insight.

A brief history:

Cervical - Anterior fusion, August 2013
Lumbar - Laminectomy, 2010; ESI's, medial nerve block, radiofrequency ablations (both sides), and epidural lysis, 2013.

The neurosurgeon I have been seeing for the past four years recently said that there are three of my lumbar levels that are equally bad, but he can't pinpoint which one is causing my back and leg pain. For about a year now I have been unable to sleep in bed for more than an hour before I end up in the recliner for the rest of the night, and walking is becoming increasingly difficult. He sent me for a nerve conduction study (EMG) in an effort to identify the level. The study was inconclusive in pinpointing the level that is causing the pain. He said that no one is happy with a three-level fusion, and suggested a SCS trial.

I had the trial implant on Thursday of last week, and it was removed on Monday of this week. I was skeptical going into it, however, I really did experience about a 75% reduction in my pain. Success! Due to insurance changes in the new year, if I am going to get the permanent implant, it would need to be done before the end of the year, so I am scheduled for surgery on December 24. Merry Christmas to me!

However, during the trial, I experienced a LOT of pain (sharp stabbing) in one spot in my mid-back. I thought it was perhaps where the lead was placed, but when I asked the Medtronic's rep, she seemed perplexed - as if this was a new pain she was hearing about - and said she would ask my doctor. She came back with maybe it was the position I was in when the trial unit was placed. The pain was so bad that I could not lay on my back, and sitting back against a chair was very uncomfortable. That specific pain was the only reason I needed pain meds during my trial, as my normal back pain was controlled by the SCS. When I had the leads removed, the nurse removing them said she thought that pain was due to the leads.

So here I am three days after the leads were removed, and I am still having considerable pain in that same spot. I saw my pain mgmt. doctor yesterday, and he said I shouldn't have the permanent implant until this is completely healed. Therein lies my problem. I'm unsure as to what caused this - if it was the lead, and the permanent lead is placed in the same spot, will it always hurt like this? If so, I would be trading one pain for another, and that doesn't make sense to me.

Has anyone had a similar experience? Any insight or thoughts would be so very appreciated!

=Becky

I just had mine put in yesterday and it seems I'm having the same pain you had...the rep told me that it's ligament pain and it should go away in a 2 days...it feels like labor contractions in the middle of my back...goes away when I turn it down. I'm hoping it's just pain from the entry point of the lead but would love to know what other people say...

welcome to both of yoou
 

Hi there...I am thrilled you have found this place BEFORE your permanent....I did not find this place until six months post op!!

I can only tell you my experience!!! It is a very personal decision I feel based on the amount of pain you can endure and the quality of life you have.

My nerve injury is at L5/S1...on the interior side...deep pelvic pain relieved with rhyzotomies twice a year...tho only for 4 months at a time so I decided on a trial for the SCS
when the lead was stuck in me during the trial...it went EXACTLTY to the "SPOT" that had been throbbing with pain and spasms...I wore it for 5 days...the night of day 3 I rolled in bed and felt a crackle/grind/movement of the lead inside my spine....I am freaking and call my rep...nothing he has heard of before and advises me to go to ER if I feel I need it.
Now the oddest thing is....all the pain is gone...just like it had cut thru the nerve...I mean all the pain is gone!!!
So I have the trial removed and I cannot get time off for two weeks to do the implant surgery...and the pain is still gone!!!....so what to do??? I went ahead and had he implant. As you have read the permanent is not usually as good of results as the trial. My debilitating pain in the one spot has only reappeared three times in the last almost two years. Rest and the SCS help it go away and I use the SCS daily as it does sooth me and help with other aches and pains...so here is the really ironic point.....I now take more meds for the pain from the SCS then I ever took for the back pain.
I did not know what a laminectomy was and that they were going to do that.
let me tell ya---this thing hurts in me...for a year I felt like I had a broomstick in me and my posture is shot and can't lift my arms up too high anymore. The surgery recovery was brutal for me.

I wish I had waited...I did not have good advice or support.....since I have it I use it....when insurance will cover the expense I am looking into removal of it.

Read your eyes out----so much information here and caring people who will be here soon for comments too.

all my best to both of you and sorry for your pain.
Johanna

Thank you both for sharing your thoughts!
 

Thank you both for your replies. Im wishing you the best with your trial, Coley.

I talked to both my doctor's office and my rep today about the pain . . . still don't feel like I'm getting a straight answer. The general consensus seems to be that perhaps the lead went a little too far, and then maybe the doc pulled it back, and it caused irritation, leading to inflammation. I'm hearing a lot of "maybe" and "perhaps" - which is frustrating.

Hananabananna - I am so sorry to hear about the problems you have had. The fact that you are on more meds now than before - all because of the SCS - is unbelievable. And scary. Also, you said that the perm implant doesn't give as good of coverage as they trial. That kinda surprises me. All my rep keeps telling me is how much BETTER the perm will be - more consistent coverage, etc. Now, I'm not having laminectomies with mine - just the leads sutured in place - does that make a difference?

I told my doctor's office that I will let them know on Monday whether or not I will have the surgery on Tuesday. The good news is that the pain in my back seems to be a little better today - but not knowing what caused it, if it will happen again with the perm implant, and if it does if it will be permanent or temporary - is making it very hard to make a decision.

I'm just so confused!

Thank you all for your thoughts, comments, prayers, etc. - they are very much appreciated!

=Becky

read
 

Becky,
Please...do read...there are so many cases here of GREAT results. MANY MANY

Yes there is a big difference ...the leads are stitched in...and have to "scar in" meaning scar tissue has to develop around it which keeps it in it's place...now the paddle and please research this and do not take just my explanation...
the paddle is inserted into the spinal cavity by chipping out a piece of a disc.
The permanent has many 'programs" increasing the span of coverage and the intensity of the unit making that better although From what I have read the amount of pain relief is decreased with the permanent although still good.

have you read about BLAST?

I do hope others chime in soon.....go read Mark56...his story is very informative.

Also your rep will be the one person who you have to deal with on a constant for the first 4-6 weeks....yu have to have a good rapport with them and I do not feel your rep is as responsive to your needs as they should be...

Johanna

Very helpful info!
 

Thank you for the information, Johanna - most helpful!

Yes, I have read about BLaST - I intend to follow it to the letter. Fortunately, I have a sweet hubby who wants me to feel better as much as I do, and he will not let me life a finger after the surgery. He really is the best, and I am so very blessed to have him. I have also read many of Mark56's threads, posts, etc. Everyone has such good insight. The road that we all walk with this is so very similar, yet so very different. I am thankful to have found a place where I can learn from others, and maybe one day be an encouragement to someone else, as well.

My rep called me today - she had spoken with my doctor, and due to the end of the year, and the fact that Dec. 24th is the last day he will be doing surgery for the year, he needed me to give them an answer today as to whether or not I would have the surgery on Tuesday. On one hand, I don't want to feel pressured to make a decision - which I told her - but on the other hand, I understand that there are a lot of people who need to have things done before the end of year, for insurance reasons. In fact, I am one of those people. It wouldn't really be right to wait until Monday to give them an answer, when someone else is waiting to move forward.

In light of the fact that the area in my back has continued to heal and feel better, I told them that I would keep my surgery spot for Tuesday, December 24. I'm nervous, hopeful, scared . . . well, you get the drift.

So there it is - decision made. I sure would appreciate any and all prayers!

=Becky

Good luck
 

Hey Becky, good luck with Tuesdays procedure. I had mine done last Tuesday, they had difficulty getting the leads in and what supposed to be an hour took nearly three hours. End result, one lead in, but the battery is in and they will look at doing a laminectomy in the new year and put in a paddle. That said, I am recovering well and came home from hospital on Friday morning. I still have dressings on so don't know if I have sutures or staples, I also seem to have 4 incision sites. Will know more on Monday when I see the Dr again. My husband is also wonderful and won't let me do anything, we have had to many procedures previous where I gave come home and soldiered on, sometimes we are our own worst enemies! Not this time.

Hi Becky
 

I pray you are able to comfortably make the right decision for your need.

Medicine and its practice is barely science and is more art..... the reason medical buildings used to be referred to as medical arts buildings..... This is why there can be so much by guess and by gosh. Dealing with the nervous system is a gamble every time it is touched. Oh, how I know this, as I now face a posterior cervical fusion Jan 2 to remediate nerve issues posed by anterior fusion of multiple levels in 2012. The pain is beyond belief.

Yet, I am one of those incredibly blessed success stories from a T8/T9 implant for lumbar and sciatic pain which radiated to my legs. Before the onset of this NECK thing, I had fully withdrawn from all...... I mean ALL pain meds. It allowed me to resume my profession, and I felt wondrously blessed.... still do.

I can't think why that sharp pain unless the ideas floated by your doc, rep, and HannaBanana is your reality.

So, I am left with praying you are able to find what will be best for you.

@Coley, I write to offer support and prayers, because that pain you now know is something abnormal to a successful situation. This is why, exactly why the Trial is the way to go to learn whether there is opportunity for success.

Prayin for both of ya,
Gotta stop this typing, because it is "killing" my arm,
Yup, :hug: :grouphug:

Hi Becky!
 

Welcome! So glad you found us :hug:

I'm sorry to be reading of how severe your pain has been, especially this past year and having to sleep in a recliner!

my situation also left me 'squeezed' into the last week of the year, so I understand where you're at on this.
How fantastic that you were able to get 75% percent relief with your trial! I wish that you'd been given a clear answer regarding that pinpointed pain where the leads went in, but obviously they didn't know for sure.

You've got a big week ahead! Since you are a 'veteran' to the post op restrictions I won't nag you about how important it is to NOT let those leads slip and migrate! ;)
I will be anxious to hear how it goes for you and I wish you the very best during and after your procedure.

It's great to have you with us, Becky! :grouphug:

Caring,
Rae

how ya ding
 

Pamela Jean...looking for an update..
I do hope all is well and the healing is going as it should.
Go kiss that husband...you are blessed to have him.

Johanna

so sorry....I am the ding!!!

How are you doing???
lalalalalalalala...."if I only had a brain"

Nevro senza
 

Morning everyone, I see my Dr this afternoon and my rep so should know a little more. The last two days I have had a crippling headache, yesterday I took a tablet that I had shelved last year and hoped to never take again, but it was the only thing I could think of to knock me out.

I have had fluid leak from the dura before and sure hope this is not what has happened again as last time I had a seizure following an epidural. Ie I had the epidural on August 3 for back pain, developed the headache about August 6 and was put in hospital on August 10 because of the headache and had a seizure on August 13, they did a blood patch on August 14 which cured the headache but, the seizure cause me to fracture ribs and vertebrae and they discharged me from hospital with 2 fractured ribs, 1 stress fracture and 4 compression fractures as the nurses didn't pass on my message to my doctor telling him I had new and different pain and the nurses thought I was faking it to get an injection. We got hold of the nurses notes a month later and let me tell you, some nurses are just outright awful, I don't know why they are in the job, they recorded notes saying I was advising my pain was 8/10 or 9/10 but I was able to play games on my computer. My computer was my Kindle which I use to read stories obviously. Anyway it's in the past now and is no good looking back but I will never go back to that hospital. Oh and the best part, I was in a state with blood running from my mouth, chest pain and all the leads attached to me and warning to talk to my husband so the nurse rang him and told him not to worry I had just had a panic attack! Later tests proved I had the seizure because I was in acute pain from the headache!

My husband is awesome, he was up at 4 to do the watering, the animals and also put in a load of washing before he left for work at 5. Yes, I know I'm lucky.

Rrae, feel free to nag me and remind me what post op restrictions I should be following!!:eek:

thinking of you Becky
 

thinking how you are getting everything ready for Tuesday.

The world has to stop for you this week....you know the drill and the best wishes from all of us who travel your journey as we look back on ours.

I have been doing pretty good lately and have a couple of Angels just hanging out....I am sending them your way on rays of healing light and love.

Johanna

Mark56 - I will be praying for your posterior cervical fusion on Jan. 2 - that you will find relief and healing.

PamelaJune - I am glad that you have someone at home to take such excellent care of you, too! I hope that until you are able to have the laminectomy/paddle, that you will find relief from the one lead you do have!

Rrae - thank you for your thoughts, and your prayers - and the warm welcome!

I am now concerned. A couple of years ago I lost almost 100 lbs - which is great - except now I have a lovely fold of extra skin that annoyingly sits on my lower abdomen. Today I noticed that where the crease of my thigh meets the "fold" there is about a three inch long extremely red skin irritation, and it was bleeding a little. I don't know what happened - I noticed it itching a little bit, but when I looked at it, I was shocked. I know that when I went for my trial they asked if I had any open sores. Now I'm concerned that when I show them this they will say they can't do the surgery.

Am I just freaking out and worrying needlessly???

FYI - if this is nothing and they do go forward, I am my surgeon's second case tomorrow. I have to be at the hospital at 7:00 am, which means a 5:15 am departure from home. Crossing my fingers that all goes well!

=Becky

Thanks again, everyone!
 

Pamela June - I am so sorry to hear everything that you have been through recently. I am beyond frustrated for you regarding what the nurse wrote in her notes. There are some really bad eggs out there - and some really good ones. I hope that your next experience - wherever it might be - is over-the-moon good.

Johanna - Thanks for your good thoughts! I am glad you have had some angels lately - and thanks for sending them out to me on loan! I promise to take really good care of them and send them back A.S.A.P. :Girl(angel-flying):

=Becky

rash
 

Hi Becky,
I had a hysterectomy 25 years ago and have a belly that folds at the incision site which was huge at the time and closed with staples. In the Florida heat I too get a rash. I treat it with a hydrocortisone cream.....my experience.

show it to the intake nurses.....I doubt it will interfere...you do no mention puss or infection..

prayers your way....healing hands
Johanna

Hannah,

I think your information was right on.....Just wish she was not in the position to make a hasty decision with something so very important.

Praying all goes well for her.


Gerry

me too Gerry...the option of pain relief again after they take the trial out and the end of year....that there is some pressure for sure.

Becky
 

As Johanna writes with wisdom, tell intake about it, then as Gerry wisely advises, do what is best in the grand story of life decisions. In the meantime try not to worry, and we all pray all will be well. Let professionals advise what best to do. Then you are in a best informed position to decide.

My permanent implant was delayed because INFECTION with pus and leakage and all occurred at the Trial stim lead insertion site....... just from the stitches taken to hold leads in place. I hope all will be well. Even if delayed, for mine was delayed a bit for best possible care, the long term solution has been my best.

Blessings on you tomorrow, :hug:

ditto with after care also
you take charge

Home!
 

First, thank you for all the prayers today!

I was supposed to be second case, but my surgeon's first case was late getting there - and I was early - so I was bumped up to first. Yay!

Surgery went well - I was in a LOT of pain on the way to post-op, but once there, they were able to get it under control pretty quick. When the Medtronic's rep came in to turn my system on, the remote wouldn't work. Fortunately she had another one on hand, and before you knew it, I was up and running.

It feels good to have my internal massage chair vibrating again! I'm hoping the surgery pain passes quickly, and that the permanent implant will be as effective as the trial one was.

Best wishes to everyone on this awesome Christmas Eve!

=Becky

so cool
 

great news!!!


Now sit still or Santa will not come to your house.

HB

be well take good care of yourself

Actually
 

I think Santa BLASTed into Becky's house........ maybe a little early from the sounds of the schedule change up!

Be well, take care, enjoy a blessed Christmas, and may your stim do wonders while you heal from the implant.

HUGZ :hug:

Yayy!
 

Becky, you sound great! I know you are probably in pain, but at least you know what to do and what not to do and that it WILL pass! Keep up your enthusiasm, for this will pay off. You are now on the road to a much better quality of life.
Rest my dear REST!! :cool:

Rae
:grouphug:

I was just wondering how you are feeling/doing at this point! I hope everything has continued to be a success!

Hi Froggy
 

Thanks for venturing to write! :)

Thanks for asking!
 

I am excited to say that my stim has been a huge answer to prayer for me!

I am five weeks post-op tomorrow, and am encouraged every day as I discover more and more of my life and world that I thought was lost to me forever.

Prior to my SCS, I was only able to stay in bed for about an hour before having to sleep in the recliner for the remainder of the night. Now, I am staying in bed pretty consistently for six hours - on a good night seven - before hitting the recliner. I am hopeful that, as time goes on and I continue to heal, that I will be able to bid my recliner a fond farewell - as far as sleeping in it goes!

I have had my Medtronic's rep tweak my settings a few times, and I'm getting pretty good coverage right now from the tips of my toes all the way to my lower back. I think my pain relief is around 60-75%, which is simply amazing!

I hope that once my BLaST restrictions are lifted, I'll be back out on the farm with my hubby, chasing chickens once again! :Cowgirl:

Gentle hugs to everyone!

=Becky

Hey Becky
 

I think I can almost see you chasing chickens now! Is that you over there? :) Nah, must've been reflections on Pooh and Rae, cow and hay bales respectively. :)

I reckon you will get there. You are headed in the right direction for now!! Keep up the good healing!!! :)