help understanding nerstimulator

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stumped by pain
Regular Member


Date Joined Feb 2011
Total Posts : 23
   Posted 2/18/2011 1:11 PM (GMT -6)   
 Hello, New to this so please be paytion with me. I dont spell good either haha oh well .
  can anyone out there help me im so tired of hurting 24/7. doc is schedualing me for the trail period with the nerostimulator and iam scared to death. this makes #3 for back sugerys and did all the nerver burns tring to get reid of the pain.
  I got some info from doc but the man is very bussy(that fightens me)but where i live theres not much confused  
 anyways if anyone could help it would be nice. mayb just someone who has done this just to visit with for a few.
  I did ck the one link i found last nite around midnite lol dont know who said it but sleepin is not easy.
  thks for yalls time 

stumped by pain
Regular Member


Date Joined Feb 2011
Total Posts : 23
   Posted 2/18/2011 4:49 PM (GMT -6)   
 Hi Paula,
  Thanks for welcome... I had a fussoin with all the pretty metal in o8 L4-L5 and s1. Had a discagraph in 06 at that location. I have degenerte disk as well and would u believe when i was young i broke my tail bone twice.
  I was so glade to find this pg last nite and find out Im not alone. Im not a spring chick any more and I dont dounce back as well any more.
  I found one person on this pg that had pics to share and iam extremely grateful to her for sharing from the start and I dont knw her but I do.
  Today has been a long down day....yesterday was doctor and by time I left there every bone in my body was in knots and as tight as rubber bands and there still that way today. It takes couple of days to go away. I wonder if the sugeron that did the fussion if he knws about this stimulator ?
   The doc I have is good doc....no bed side manners...last one had them. i cant seem to find one thats good and has manners lol.
  I hope i get to knw you all and you me. Im tring to reach out...outside of my husband and 2 grown sons. 
                                  Thanks again

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16423
   Posted 2/18/2011 4:54 PM (GMT -6)   
Hi Stumped and welcome to Healing Well's chronic pain forum. I am glad that you found the forum, at least by coming here you will see that you are not alone in your battle with chronic pain. All of us on this forum suffer with chronic pain for one reason or another. We all have a different story to tell when it comes to CP, no two stories are alike either.

I have a pain pump and no experience with the SCS units. There are some members here that have them and hopefully later they will see your post and give you some input. I do know they do not make the pain go away, instead it creates another type of sensation that is suppose to over ride the pain in a way from what I have read here at the forum. The SCS UNITS are like anything else we try with CP, it works for some but not for others. I think the goal is hoping the units may cut your pain down by maybe about 50% at the most and hopes they can reduce your oral medication intake too. They do not work for everyone. As Pebbles said, if you are not comfortable with the dr that ha recommended the unit for a trial, then try to find a dr that you are comfortable with.

Anyway, I wanted to pop on and tell you hello and welcome aboard. Please keep posting an letting us know how you are doing.
Moderator Chronic Pain Forum

Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 2/19/2011 11:48 AM (GMT -6)   

    Dear Stumped,

      Good morning  :-)   I am so terribly sorry for being late in welcoming you. As you can see we have many kind, caring and compassionate members here. I think you will fit right in.

     I have no experience with the internal stimulation devices. I only use a little external one. But I can link some information for you.

Here it is....

~~>  http://en.wikipedia.org/wiki/Spinal_cord_stimulator

~~>  http://journals.lww.com/spinejournal/pages/default.aspx

~~>  http://www.jpain.org/

     One thing that did stick out in your post was that you mentioned that your doctor was very busy. I always worry when I hear of a doctor who is rushed or too busy to spend extra time with a patient. I really think you might want a second opinion before you go through with this. For many people it reduces their pain (not completely) and even a reduction is reason enough for the implant.... For others it doesn't work. They spend a year or even few years before they get fed up with it and have to start back at square one. The moment you feel rushed. That the you are being dismissed and hurried through the process... that is when you need make your voice heard and your concerns known.

     I hope more than anything that the implant helps you. More so, that it makes a notable reduction in your pain levels. Please know we are thinking of you here. If you get some time, update us as you go through the process.

*hugg*
  dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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stumped by pain
Regular Member


Date Joined Feb 2011
Total Posts : 23
   Posted 2/19/2011 1:59 PM (GMT -6)   
thks dani for the links. im going to make appt with PCP to talk with him about all this as well hes the one that sent me to this PM. think the fact that the PM told me he was bussy is the part of this that is scaring me to death. Im like that. well have learned to be.
The PM suggested this in Dec and just now getting on list for trail cause they dropped the ball. another reason for consern.
just not sure what to do now.scared to go to another doc and find out this is best to try and have to wait even longer.

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 2/21/2011 6:45 AM (GMT -6)   
Hi Stumped;

I wanted to welcome you to the CP forum. I have been trying to get my doc to put in the Stim for 5 years now. Unfortunatelly the psych doc says no way. So I am at a stand still with all of this. I did want you to understand one thing.....the stim is not a "fix". There is no fix for us, only pieces to control our pain.

You will never be the same again and I am sad to say will always have some kind of pain. What your doctors are doing now is trying to get your pain as low as they possibly can so that you can resume some sort of a normal life (whatever normal may be for you). It is not going to be a miracle cure and your always going to have some pain. But I understand that they work well in some people.

Anyway, just wanted to stop and say hi and wish you well on finding some pain relief.

Scarred
I live to "Tame My Pain!" 

stumped by pain
Regular Member


Date Joined Feb 2011
Total Posts : 23
   Posted 2/21/2011 10:19 AM (GMT -6)   
Tks Scarred,
Sorry your having so much trouble getting to try this thing. I would love to start walking again without all the pain.
I have gained 30 lbs this go around with all the holidays and med changes an just eating:( would be nice to be able to walk and not be in horrible pain for three days and nites.
thks for the incoragement I knw that ill never b pain free again just like so many of us this is a life time thang.
The hardest part for me has been tring to convence myself that i cant do some of those things any more and i forget that i did this or that and try again and pay for it. im learning from the pain. im not sure what normal is any more cause it just keeps changing.
hang in there hope u finially get an ok to try.

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 2/21/2011 11:47 AM (GMT -6)   
Actually Stumped you are not going through anything that each of us have gone through being new to this whole CP thing. I too had the exact same thoughts as you do more then 10 years ago. It's an unfortunate fact that all of us go through kind of a grief process that is simular to that of learning that a person is dying. The five stages of dying are the same: we go through denial that we have a problem; then we go through bargaining, we will do anything to have our lives back; then there is anger where we often blame the doctor or someone else making us this way; there is depression, somtimes I think I am here as I get depressed often thinking that "gee I can't do anything to help keep the house clean." and lastly there is acceptance, where we accept our fate and try like hell to keep what is left of our independence in tact.

I think at times I am half here as well, somewhere in between depression and acceptance, as life as I knew it is gone, but I am fighting to keep some of it together, then I get depressed when I think about how much is gone. No more hunting, hiking or the fun things I once liked are going to be in my future, but I am trying to keep what I can do intact.

The situations that we are faced with as CP patients is not easy to understand for someone that has not gone through it. This frustrates us CPers cause we want our loved ones to know what we are going through. As my hubby says "I gotta live with the hand I was dealt." I tell him "I don't have to like it though."

Once you figure out that those things you can't do anymore are in the past, you will find other things to do that you have found a new love for. It's a hard balance to find, but I believe anyone with CP can find that balance.

Hugs

Scarred
I live to "Tame My Pain!" 

stumped by pain
Regular Member


Date Joined Feb 2011
Total Posts : 23
   Posted 2/21/2011 8:07 PM (GMT -6)   
Thks Scarred,
I never even thought of lookin at CP with those eyes. makes good sence to me.
I have been tring to learn some thing i can do or might like to do i tried my hand at knitting ya we wont talk about that haha. but i can crochet some got a couple of books and on good days i love to cook. im tring to learn to make bread of all things. always make rocks...
thk you so much for sharing with me because i never knew how to explain myself.
Im like you i dont have to like it . Now i ll have to work on learning about this grief thing too. I lost my mom 2 yrs ago and took me long time to deal .
Its hard to deal with all this when all your life your told to pick ur self up and get on with it. (military) any ways just wanted to say thanks

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 2/22/2011 10:20 AM (GMT -6)   
Dearest Stumped,
 
Sorry it took me so long to reply, but I know the first time I asked questions about a stim unit I was told to search the CP forum for older topics on the matter. Infact if you were to search back about a week you'd find an article written by me about how my trial period was going with my Stim unit.
 
Yes, a couple weeks back I was in the middle of an SCS unit trial period. I'd already done the required psyche exam. Personally can not fathom why it matters if you're mentally stable enough ... most of us have elevated levels BECAUSE of our pain /and/ our meds! that and the fact that most shrinks down-play your pain or treat you like you make a big deal out of it because they just don't understand to the point where I wanted to punch the one who did my write up.
 
Anyway, for me the SCS Unit was my only option other then narcotis, and it's been proven that drugs alone barely manage the pain and don't stop the progression of the "disease" I have.
 
My big question is where abouts (just state) do you live, and where is your pain located? Upper back, lower back? You mentioned walking without pain....
 
The reason I ask, is like all surgeries, the SCS surgery has it's risks as well. I guess because I need to have my leads all the way up to nearly the base of my skull (leads originally fed all the way up to C2 during my trial) it adds to the risk factor, and where I live recently there have been to many .... complications to the point alot of surgeons in my area are not even doing the implant surgery anymore. Which leaves me in a rock and a hard place.
 
The Stim unit doesn't work for everyone, but for me ... it did. Oh the relieve, the sweet glorious relief from my pain!! It wasn't totally gone, but I tell you I noticed it a heck of a lot less! Where normally I'm at a 9, I was down to a 4. Yes, all the padding and tape to protect your surgical site and the exposed wires is annoying, as is a few other things like not showering, having to wear the unit in a pouch at your waist... but I tell you the break from the pain made every little annoyance worth it!
 
Did you get sent home with a DVD about the SCS unit? Your PM Doc should have sent you home with one once he/she decided that the stim was your best option. Do you know which company your doctor uses? There's two big companies from my understanding: Medtronics, and Bostom Scientific's Percision Plus. If you got the info packet there should be an 800 number you can call -- do so. Feel free to ask questions of them. You can also ask me whatever you want to know and I'll do my best. I had the fortune of having a neighbor across the road have an implant so I was able to talk to her extensively about her implant. For her she was in a horrid car accident that dramatically damanged her lower back. She lost so much of her life.... now she has most of it back. Now she's able to go for walks again with her husband, she's able to ride her motorcycle again, do house work, even sit and relax to watch TV.
 
Remember knowledge is power, and one can never have to much knowledge.

stumped by pain
Regular Member


Date Joined Feb 2011
Total Posts : 23
   Posted 2/22/2011 10:55 AM (GMT -6)   
Thk u I think ur the one i read about on an older post. I got encouragement for you...
My PC olny had two of the cds to send me home with so got most of info from internet.
my pain is in lower back an has worked itself up middle of back. digenerate disc disorder...
I have tried my best to try and keep going but the pain has just gotten to be to much.
The PC sent me home with medtronic cd to watch. im hopeful that it will work . thks so much for the hope

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 2/23/2011 1:38 AM (GMT -6)   
You're very welcome, Stumped. I'm glad I could help.

The neighbor I mentioned has a Medtronics unit, and she loves hers. With your problem area being low to mid-back I would imagine your surgery has much less risks then mine does. Has your PM doc written your referal for you psyche test yet? I know I was required to do mine before I could even do my trial. It will not feel fair, like Scarred said, that some stranger who doesn't even know you gets to decide your fate.

The trial surgery is pretty simple. They give you enough meds to keep you comfortable, but they do not sedate you all the way. Injections at the incission site to numb you up a bit, but it's still uncomfortable I won't lie. They use a large needle from what I understand to make the opening to feed the lead, and then they frequently put in one or two sutures just to keep the leads in place during your trial. You'll be restricted from alot of bending or twisting. Once they get your leads in they'll turn the unit on to make sure they have it in the correct area and once they do they'll turn it off and finish up. Before you even go in you'll get to meet your Rep; this peron works for Medtronics and will be like an angel to you. They'll talk to you before surgery, be in the room during your surgery, and afterwards they'll hook your unit up and program it for you. They show you how to opperate your remote and go over all the little details. My Rep called me every day to check on me, and when I mentioned I wasn't getting the exact coverage I needed for my range of pain she made arrangements to meet with me the very next day and reprogram my unit to get me better coverage! My doctor's office called almost every day too, mainly to make sure I was recovering from the procedure okay.

After your trial period, which is usually at least 10 days, you'll meet with your PM doc again and they'll pull off the tape and then pull your leads. What an odd sensation that was! Not really painful, just mostly weird and a little uncomfortable. Then he snipped my sutures, wiped me down with an alcohol pad and put two bandaides on my back where my wires had been. I was even able to shower that day! And I tell you after no showers or baths for 10 days I was overjoyed! Oh I sponge bathed myself almost every day, and every few days I had my Mom help me wash my hair in the sink.

Sleeping was a little uncomfortable just because of all the stuff on my back, so I slept mostly on my side opposite from where I wore my trial unit (although I frequently just unplugged that and removed it for sleep) and used a spare pillow to keep me from moving around a whole lot. Your back will be tender that first day after your procedure, but for me it really only lasted one day, and it certainly wasn't worse then the normal pain I delt with. It's out-patient too, so you go, they do their thing, and then you leave ... obviously with someone else driving. I know for me I experienced some "jolts" of extreme sensation from my unit, but even with my leads fed in at the middle of my back, because their was so much "wiggle room" I frequently felt like I was getting zapped. If you're sitting still though you minimalize this sensation; it's also the reason they have you turn it off while driving ... don't need that sort of thing happening while you're driving a car! This jolting is minimized with the permanent only because for your permanent they actually suture your permanent leads into place. You'll have the number for your Rep though, so you can call anytime if you have questions or concerns. Big thing is to remember to take your remote with you everywhere! I kept mine in my pocket of my coat, or in my sweat pants -- that way I could adjust it up or down as needed, or even turn it off. It takes a few days to get used to, but you can the reliefe is basically instant.

Don't be affraid to call Medtronic's 800 number and ask questions, the same with your PM doc, or even others who have one. And certainly feel free to ask me questions as well.

Best of luck!
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled and on Percoset for pain.
Hoping 2011 will see my spinal cord stimulator unit finally implanted.

mary3
Regular Member


Date Joined Jan 2011
Total Posts : 35
   Posted 2/23/2011 7:12 AM (GMT -6)   
I pray you have great results with your trial for the SCS. Thank the Lord they do a trial, I couldnt stand mine being in for more than a day and a half, but, that was becauase the nerves were running in to my leads in my back. He said that was not normal for every one involved, as not every case is the same. I will tell you this, it felt wonderful to have that stimulation on my legs....I mean wonderful!!!! It made me sad that it didnt work. Your Medtronic's team member that will be YOUR person to deal with, will be GREAT!! She was always there to answer questions when I needed answers, no matter what time, very reassuring. I pray you receive the same care, I have no doubt you will. It is irritating to have all the 'stuff' on your back during the trial....but, if it works, its all implanted and will not be like that. I had a hard time dealing with all of that on my back, but, again, I have major nerve damage, so the nerves were running all around that lead and it was highly uncomfortable., otherwise I would have had it implanted just to have the 'nerves' fooled in my legs to get relief. It is a great device, give it a chance, its a little weird, as far as the sensation, but, well worth it, if it truly works!

I pray you get relief and remember, call Medtronic, thats what they are there for!!!!

stumped by pain
Regular Member


Date Joined Feb 2011
Total Posts : 23
   Posted 2/23/2011 9:47 AM (GMT -6)   
Oh thks you both so much..as the wait for the appt is long. Yes i have seen the phyic doc and he gave it all a go. Im waiting on the PM doc to get things set up (saw him last thursday) I was hopeful that I would hear something this week,its already wensday so i guess not. I knw it said it takes a while to get the trail period set up. PM doc told me he has thousands of pations with these units. I sure hopes it will help. so tired of the leg thang going on...you knw the burning feeling and the tingling and the cramps omg just from walking in the house and my house anit that big all one leve.
Thanks for reassurence that the rep will be there was consured about that as well...mainly cause of where we live (east tx).been here sence 78 but theres lots of bubba(good old boys) here lol.
Sorry mary3 that urs didnt do right. I have had the fauset nerver burned in my lower back(i believe all but the one ) it arked off the metal and hurt really bad..I cried even with the IV meds i felt it.
This is the last thing to try i guess ? If it will help lower oral meds that will be a good thing even if it is olny for a while.:) hope yall have low pain day. thks again stumped
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