Help, scared, pain and feeling alone
 

I had my SCS put in yesterday. When I was talking to the Anthestic person during the surgeon they told Motrin would be more than enough for pain knowing me! We are friends and he watched me go through 2 c sections and. Open gallbladder and took no medicine after I left hospital.

Anyway being 36 hours out of surgery I feel as my back is broken. It hurts. I had Vicodin which came from the doctor who done my surgery, I take it so sparely I was only missing 10 pills out of a bottle that was filled two months ago, but I did pick up a new script on my way. So the doctor has taken good care of making sure I had pain medicine. I am just in shock, should I be in pain like this.

I am so scared of what this means, for my life I am a 31 year old with RSD and now SCS. What restriction do you live with?

Please share any and all info! :confused:

Pain Takes a Toll
 

Hi Bratette- Thank you for coming here and trusting to post. Caring folks will clamor to give you their thoughts and hugz. Here is one :hug:

If you just had the SCS implant, you have just been through significant surgery. At least two incisions and the push of an implement from one incision to the other to pass through the wires to connect the leads to the signal generator. It all produces pain. If you had paddle leads emplaced in your spine as I did, you have probably had a laminectomy, which means some of your spinal bone was removed to make way for the paddles to be inserted. Much has been done. Pain is the natural result. Good news is it will pass.

My docs and especially the nurses said USE THE PAIN MEDS POST SURGICALLY TO STAY AHEAD OF THE PAIN. They were not kidding me when it was said. The hurt was outa sight.

All of this being said, if you follow post surgical restrictions such as BLAST [no bending, lifting, stretching, twisting], walk, take your pain meds, walk, be kind to yourself, walk, and then walk some more [not to excess, but enough to let those disturbed muscles know things are OK, then you will soon see relief on the horizon. A couple of weeks of pain would not be outside the norm. It will decline as that time progresses.

Use the prescribed pain meds. Not to excess, just as prescribed. It will help calm the fear. For me the surgical incisions calmed faster than that channel through which the implement [it looks like a stainless steel spike] was passed. That channel was irritated for a good while, but it did calm.

THEN...... when your program is turned on, hopefully you will know the JOY I felt when the stim was brought online. It gave me peace from the unrelenting nerve pain. It is not absolutely perfect....but, I was able to totally abandon the pain meds and get my career up and running again. I hope and pray the same for you.

All the best, :hug: :grouphug:

Hello Bratette!
 

Welcome!
Mark said it very well. I laid on my back with a cold gel-pack, which helped a lot while my surgical pain was healing. I remember going thru a time just as you are - feeling very uncertain and discouraged.
This WILL pass! The way I look at it is that this is a wonderful trade-off. The surgical pain WILL wear off and the SCS helps very much in covering the chronic RSD pain I was suffering prior. Other words, I would gladly go thru the surgical pain again if it meant achieving the quality of life I've gained via the SCS.

THE most important thing right now is that you follow the strict post-op instructions in which Mark speaks of.
This is the time you will be very restricted. As you heal and as the lead wires scar into place you will realize that the pain you are feeling will become less each day.
After the healing, I got to a place where I'd forget the unit was even in me!
The soothing stimulation is a godsend and now I can get out and do things and actually ENJOY life, as opposed to being stuck at home feeling as tho the world was passing me by.

It's great to have you here! Stick around and ask anything you'd like. It's so nice to have this place to come to and visit w/others who know exactly what you are going through. The vast majority of family and friends can't really grasp the whole picture. But it sure is nice to have their support.

Rae
:grouphug:

Hi Bratette
 

I can't say that I know your type of pain of either the RSD or post op pain right now soon though for me of the post op. What I can tell you right now is that you have come to the right place for help.
Mark56,Rrae,Nanc,Tk, All have been great and very informative wealth of knowledge for me answering any and all of my questions and concerns and pre op jitters for me. Hopefully even I maybe of some help in some way.
From all of my reading here on this site and other places researching scs implants and the vast majority of scs devices I do know it is of great importance as Mark56 & Rrae suggest please please please follow what they mentioned about BLAST its very important. Here is a link to that acronym it will take you right to it.
http://neurotalk.psychcentral.com/sh...ferrerid=59152 Hopefully all goes well for you and will be trying to keep an eye out for you.
MessyMark

Thanks everyone! I just had nothing but relief when I did the trail. So I thought I would instantly go to that.

I am so tired, it seems I have little energy but since I can not do anything anyway not a big deal!

How many of you were able to return to work. I was originally hurt falling down a set of stairs. The step broke and I fell to ground, while at work. It took 13 months to get a tendon repair surgery and that is with the lovely RSD set in. I learned to live with some pain, but I did not think it would get worse with the surgery. My ankle pain is a little bit better, but I am still so sore.

I am open to any ideas, advice, help that any of you have. I thought I would only get better, never thought I could hurt more.

I worry about work, and stuff like that.

Hey Bratette
 

I have seen that a lot in post on here that trials have gone so much better than the permanent implant. I'm not sure why. I do know some of the veterans of scs will tell you that over the next couple of days and weeks it should start to get better as long as you follow B.L.A.S.T again here is that link :winky: http://neurotalk.psychcentral.com/sh...ferrerid=59152 :winky: your only work right now is to get better I know that sounds foolish but you have to worry about yourself right now. As for some of the people here I know a couple of them have been able to return to work but it took sometime. Your body just went through a lot and needs time to mend. Hopefully things start to get a little better each and every day for you. Seems funny for me to be telling someone this stuff seeing I have not been through it yet I go this month the 23rd for my trial and if it works they do the implant the 26th of this month. I am just relaying messages I have read and been told about all of this from these great people here at N.T. :cool: Take care of yourself first and foremost will be watching for your post and see how you are progressing.

Oh Bratette19,
I have been there...wondering...OMG...what did I do...feeling like I was breaking in half....yes yes yes...get meds and stay away from the pain.
Pain will send your mind and body into a whole 'nuther tangent.
I am so happy you have found us...all of your questions will be answered or researched and you will have eyes that read and care...so just know that
Just for now...take an easy breath...get thru the first few days knowing we are here for ya...just for now...let go and rest..you have a great attitude...your a survivor...like us.
Praying for you
Johanna

It's a Little Bit Funny
 

..........well, maybe that lyric line is NOT absolutely the truth. Anyway, "this feelin inside" which was NOT the least bit funny after spine fusion surgeries, especially the lumbar sort, left me feeling post surgically as though I was VERILY TEARING MY BODY IN HALF if I but tried to arise to go to the restroom. Now, THAT was a feeling as though my body had been rent in two...... so imagine it when I had some of that pain after the implant surgery, BUT it was not NEARLY as bad as having my back sliced open, muscles pulled [or is it retracted] this way and that, the surgeon telling me he had to scrape muscle from the bone so he could access the FUSION site and dig into my discs....... THAT was awful recovery.

Contrasting to my implant surgery, I actually felt like and did walk in the recovery suite after surgery, in fact walking out of and around the entire recovery suite of rooms so I could limber up. This is the difference post surgical. After FUSION I wondered whether death might have been the better course. After IMPLANT I wondered.... Well, what's next? When do we turn the darn thing ON????

So I was wanting to chime in "It is a whole lot better, a whole lot better than fusion surgery." I pray you will do well with this.

WORK????? Well, if you are into thinking about work, and I surely was because our bank account was rolling swiftly to dry..... after implant, all of the careful recovery, the rehab, the use of the stim, which I use 24/7 now years later has allowed me to resume a career the car wreck took me away from for years. Once again, and RRAE and Pooh chide me for this, I work 12 to 18 hours a day, sometimes six days a week. It is very much like the pace I had when I was on top of my earning curve. My results are not like everyone's......but I truly feel blessed by this turn of events.

Please just take your recovery in stride. Do the right stuff at the right time. Easily try to insert yourself back into social life, and other things will come along if they are going to for you. :)

Givin you hugz Bratette :hug: :grouphug:

Hi Bratette! Sorry for what you are dealing with, but you are in the right place for support! These guys here are great and offer the best advice :)

I had my two SCS'c (thoracic and cervical) implanted at the same time. The surgical pain was awful, after all I had four big cuts in my back! I thought this pain would last forever and amazingly it didn't! I went back to work 1 1/2 wks after the surgery...really a little too fast. But I was amazed in how much the pain was reduced in just the first week. I had a revision on the thoracic SCS and that battery relocated five months later. That time I took 2 1/2 wks off, that was better. I am not saying that I was 100% when I went back to work, I still moved a little slow and was very careful following post-op instructions (as Mark56 mentions) but it was doable for me. Surgical pain is different from RSD pain, and it is temporary :)

I had the SCS's placed for RSD pain. I have RSD/ CRPS in my face, both hands and feet, left leg, both shoulders, trunk, head and left arm. The SCS's helped me continue to work for an additional year and a half. I am very thankful for that. Not sure what type of work you do, but I was a financial and human resource manager. Not as physical, but very demanding. I stopped working Dec 28, 2012.

Wishing you the best,
Nanc
:hug:

greetings
 

Sds
 

Well, hey Pooh! Good seeing you, but wondering how it was being an SDS patient.... I haven't encountered that acronym since Students for a Democratic Society [Can you imagine, we like idiots put some of them in Congress later??] or the Simbianese Liberation Front [whatever that was....I was a bit young].

So....don't overwork your bod too much!! K???? :hug:

Bratette, I actually just had my permanent implant Friday (2 days ago), and I just came home from the hospital yesterday afternoon. My SCS need came from spinal stenosis which may have been put in motion from scarring/excess bone growth after a double discectomy/laminectomy in 2007 (necessitated by disc injuries sustained while PULLING A WEED!!), but I have pretty severe scoliosis and disc degeneration that caused further nerve impingement/damage. I had developed a superheroine ability to block out most of the pain, at least enough to have a somewhat normal life working, etc.

I'm also in a lot of pain, although my stim unit is turned on, but not at full ability/capacity. Hydrocodone has been keeping my pain under control, mostly, and I did a lot of research by reading this forum throughout the entire process, and I've been sticking with BLAST and keeping up the hydrocodone even when I don't feel like I REALLY need it right then, just keeping ahead of the pain. I am also feeling SUPER tired and just exhausted/sleepy but sometimes not able to fall asleep, and then other times not able to stay awake. I know part of this is likely the meds in combination with the beating my body took from surgery, and I hope it'll start getting better soon.

As far as work, I plan on taking Monday off because it's a stressful day at work for me, but I can do my entire job from home (it's a desk job that I can do as long as I have a phone and laptop) and my employers have been incredibly understanding and are letting me work from home for the first two weeks. Based on how I feel today, I think I shouldn't have too hard a time getting going again--my biggest problem is the extreme fatigue/tiredness/sleepiness and that's what worries me about work--I can just see me falling asleep on a conference call!

I too look forward to the guidance of those who have gone through this before us--as I said, this forum was a huge help to me as I went through the entire process of testing/trial/finally implant.

Good luck and congrats and I hope we can both feel better soon!

just too cool
 

I was so alone for six months...it was wretched...

I am so thrilled you have found us...keep at it BLAST...rest rest rest..

let us know cuz we might not write all the time although we do read and pray.
hannabananna

Working from home!
 

How wonderful you are able to work from home, Jen!
The job of 25 yrs that I just lost was very similar. I did have an office to go to, but the business closed and now I'm trying to find a job I can literally do from home. It's not easy.
SO MANY scams that have to be weeded out! :eek:

Like Hannabanannabanannabannana :p said, just mind the post op restrictions to a tee!

....... my spellcheck feature just blew a fuse! :D

Rae

I have come to the conclusion that even though all of the absolutely wonderful nurses (and docs!) told me today would be the worst day, the fact that my pain hasn't been as bad as I was afraid it would be made me think that I must somehow be special--until a couple of hours ago, when I realized that although I am special in many ways, this isn't one of them! I'm really glad I have my wonderful sweet understanding hubby here to basically tie me down and make me rest :D

I do have one question I haven't found anything on yet...I have two options for "main" seating, one my couch and one a very firm armchair. The couch is more comfy but the seat is deep, and when I sit on it I have to scoot back a bit somehow. I've tried using my feet to push against the coffee table, and (WRONG move!) pushing myself up a little and back with my arms (both with a slippery silk pillowcase under me, and it's a leather couch). When I sit on the armchair, the seat depth is ok but I feel like I need something in the "crack" of the chair (it's a hard "L" shape where the back meets the seat). Any suggestions? I'd prefer the couch but either will work, as long as I can find a safe and comfortable way to sit in them!

Thanks so much!

Hi Jen7009 I put our couch on cinder blocks in preparations for my trial to allow me to be able to sit on it during my trial seeing our couch sits pretty low and was not able to sit on it and get up without using my arms to push myself up. Now I'm able to use the couches lower part with the back of my legs to be able to get up I know it may not work with the interior decoration but it works for me :) like I told my wife it will only be for a little while till I start feeling better and able to get up or sit down without any pain.

That is an excellent idea! I'll tell my hubby it'll be like a variant of how I get out of bed on my own--gravity down plus leg power up (can't remember what Mark56 called it in one of his older posts I read but it's also what the nurses--bless the nurses--taught me after my hysterectomy--we called it "how to get out of bed without screaming"). I also figured out a makeshift solution to my need for a "crack-filler" for my chair. Since blankets (even throw blankets) were too big, a happy accident revealed that the prayer shawl my grandmother made me was perfect--just the right size to go over my shoulders and just the right size to cushion the crack when I dropped it last night!

I'll get hubby and a neighbor to put the cinderblocks in tonight and will let you know how it goes--thanks again!

Bratette, how are you doing? Any better? Yesterday was awful for me but today seems a little better (if only in comparison). I'd love to hear how you're feeling now (hopefully a ton better?).

comfort abounds
 

ahhhh....reads to me like Grandma brushed it off your shoulders

HB