Recently implanted SCS
 

Hi all!

I am so glad that there is a post that's just for SCS and pain pumps. This site is so AWESOME!! Everyone is so great and has helped me with their comments and suggestions that I thought I would pay it forward with my story in hopes it could help someone else......

I’ve lived with chronic pain that radiates throughout my entire body for the past 5 years. After being misdiagnosed numerous times, the doctors finally discovered that I have stenosis, a split in my lower spinal cord, and a tethered cord that isn’t tethering as of yet. I was told that surgery to correct these things would not be possible at this time so they introduced me to the SCS implant. I did the trial back in October of last year. During the trial, I was hesitant as to whether or not it was working for me. It was a matter of getting use to trading in one sensation for another. Now, most people would say a tingling feeling is much better sensation then pain. I tend to agree. However, I know pain. I’ve been living with it for the past 5 years. I wake up with it and go to sleep with it. This tingling sensation is new to me. Would it be like starting all over again 5 years ago but with tingling instead of pain? I had my answer as soon as the trial was over. I knew as soon as they took the leads out and the pain came rushing back. The tingling sensation was so much better than the pain. I had control over the tingling. I never had control over the pain.

So, that same day I made the appointment for the implant. It was scheduled for February 10, 2010. My doctor and I discussed the fact that I wanted to be as active as possible since I was only 37 years old and had a 6 year old to keep up with. We decided to implant a paddle over the leads to keep them more secure. My doctor placed the leads in the T9 - T10 area. This will only cover my lower back and legs. She also had to cut out a little bone in order to make room for the leads and paddle due to the stenosis. Also, my arms and neck would not be affected with this surgery because the stenosis was worse in the cervical area. However, I am hoping that with physical therapy and exercise (which I wasn’t able to do before) it will help alleviate that pain.

My doctor told me the surgery went great. However, my body did not like the heavy duty pain meds so I ended up staying in the hospital an extra day. It’s been a little over a week since the surgery, and I am still uncomfortable with pain around the incision area but I’ve only been taking Tylenol and Ibu since the stronger meds make me sick. The battery was placed on my right side above my waistline. It’s a little tender to the touch and it’s a little bruised but other than that I have had no other pain associated with it. I was a little disappointed with the Medtronic’s rep. He tried to show me how it all worked when I was still in post-op. I told him to come back since I was still a little groggy. He came back a few hours later to my room but you could tell I was his last patient because he was very quick with his instructions and then left. Luckily, I had a friend in the room who also listened to his instructions because I was still a little out of it. When I was more alert the next day, I had more questions so the nurses called Medtronic’s. They sent a different rep down. She was so much better about explaining things. My advice in handling any rep is to not be afraid to tell them to wait until you are comfortable and can comprehend what they are trying to show you. Or have someone there who can show you after they leave. Now, Medtronic’s does provide a DVD that explains everything, but I believe one-on-one training is so much better.

So that’s pretty much my story in a nutshell. I’ve got my first follow-up appointment on the 22nd and I will let you all know how that goes.

Thank you to all who have ever posted on this website and all who are just popping in to read some of the posts. It is great therapy to express your feelings to people who actually understand and have gone thru what you are feeling!

You are all the best!!! :)

Awesome Testimony !
 

Thank you so much for taking the time to post a detailed scenerio of your experience!! I hope more and more people do the same....every bit of info means alot to us!
Some experiences are good, some not so good. Either way, it's important for people to be aware of everything involved.

I felt the same about the Medtronic Rep when I had my trial. I felt very very rushed, which caused extra stress. It's absolutely imperative to have someone there to be an extra set of eyes and ears. And it only makes logical sense that they should explain things BEFORE we come to the post op area!

You've got such a wonderful way of explaining the experience. I hope they asked you to be a spokesperson for people to reach out to. It means so much to hear it from the perspective of the patient. Not to demean the medical personnel, but they usually are very busy and have several other procedures to get thru in a day.....they simply aren't usually able to give the one-on-one that we are desperate for during such an intense time.

God Bless you! And may you have a smooth recovery!

Rae
:Heart:

So glad you are thru the worst of this. I can not say this strongly enough-THE MED. REP. is the KEY to your success with this. Is the Rep. scheduled to be at your follow up appt.? Mine came to EVERY appt. and reprogrammed me every time. I do not even use the initial programs. Pain changes and traveles all of the time. PLEASE get a good repoire with your REP. This is VITAL to the implant success! You are in my thoughts and prayers-Fondly-Carol

Just got back from my first follow-up appointment. The Medtronic's rep was not there. However, one of the nurses was able to re-program. Boy, what a difference! Each day the muscle pain from the surgery is diminishing and I am no longer nauseated!! HURRAY! I now have the SCS on and am adapting to it nicely. However, I came down with a cold over the weekend so everytime I cough or sneeze the "tingling" gets stronger. It's just like during the trial when I would sit or stand. You can tell the difference when "pressure" is added. It doesn't hurt....just a little bit more of a sensation. However, I am told this will go away with time. It has only been 12 days since the surgery and I'm starting to feel pretty good so I'm looking forward to how I'm going to feel in the next 12 days.....and 12 days after that......and 12 days after that......:icon_biggrin:

Oh My -What a time to get a cold-UGH. Isnt it mazing how reprograming works!! have it done whenever you need it. i am so thrilled that you are getting along nicely. please take it easy for awhile-the longer the better till things have a chance to scar over-I know it is hard but hang in there -it will be worth it. Fondly-Carol

Hi
I do have a question. This tingling from the SCS, is this similar to the TENS sensation, only permanent on the inside?

Oh, one more. Can the leads be placed from cervical to lumbar area?

Yes, I think the tingling sensation is like the tens unit and as far as the SMS being permanent....If you consider this, you are required to have a trial done first to see if it works. If it does and you decide to have the surgery, the leads are then implanted. They can be taken out at a later date but with any surgery, there are always risks so you really need to be sure this is what you want to do.

The nice thing about the SMS implant is that you have the ability to turn it on and off. I have found that after I turn it off I still feel a little tingling afterwards. I was even told that some people can have it at such a low frequency that they don't even feel the tingling and it still will interrupt the pain signal to the brain. I personally have not experienced that so I feel the tingling.

As to your other question about the coverage from lumbar to cervical. I believe it can cover those areas. Even though I have chronic pain throughout my entire body, I was not a canidate for it to cover both areas.
I would check with your doctor/neurosurgeon as to what is available for your specific needs because I am no way qualified, other than to tell you thru my experiences.

Hope that helps a little. Good luck! :)

Hi
I know we aren't docs here, but you really helped me a lot!!! Thank you. I also have cronic pain, seems like everywhere, and that's why the second question. I had a 4 level cervical fusion some years back, that's fine now, but everything else there hurts. I need to get in for MRIs and see exactly what is going on.

Hi folks ~ I'm going to add one thing here. I had the SCS (it's been ~removed.) It is IMPERATIVE that when you are in the trial period, the doctors or the rep does NOT give you too many "restrictions" during your trial period. My trial was for a week. I was sent home with a unit for 7 days and I was given so many restrictions that I never got a good assessment of pain relief. I "thought" it covered the pain quite well. But then I get the SCS implanted and go on about my business and YIPES ~ I hurt like the devil and the SCS just irritates the sciatic nerve more than ever!!!!

I kept having it reprogrammed, etc., and tried this thing for 6 months and then to top it off it was too "heavy" for my body and tried to work itself out! UGH. So I had to have it removed. But I wish they hadn't given me so many restrictions during the trial cause I could have had 6 months doing something else! :rolleyes: So make sure they don't "tie you down."

Thanks. Peace, Lee :)

I read on another site where a person suggested that during the trial period you try to do things you couldn't do before, to see if it really will help when you get the permanent implant. The downside is that if you do push yourself, and it takes a while to get the permanent one in (waiting on insurance approval, waiting on a surgery date, etc.), then you may be in more pain than before the trial. So make sure the dr. is willing to help with increased pain while you're waiting on the permanent implant.

Update - 5 weeks after implant
 

Well, I am at the 5 week point after the implant. I took an additional week off from work because I am was still have a great deal of back/muscle pain from the surgery. This has been the my first week back to work...although I am working half days and am hoping to go to full days next week.

I still am experiencing a great deal of muscle/back pain. It feels as though someone has their hands around my ribs and is squeezing and if I move a certain way, I get a sharp pain in my back (a little lower than the incision area on the left side usually). The doctors did tests for blood clots and to make sure that my lung did not collapse or that my ribs didn't rupture anything so I am thinking it is muscle issues. The doctor also told me that it could be because I have the stimulator on too high. (I have used a tens unit before so I was thinking that the higher the better but apparently lower can be just as good since it is internal.) Good to know!

I think it will take awhile to feel normal again from the surgery. As far as the stimulator, I have had to have it reprogrammed numerous times so I really haven't felt like I can determine if it is truly working or not because of the inconsistency. However, my doctor is fantastic about reprogramming it and really takes the time to work with me. Although I don't think she is as happy with the coverage. Although, she did not say that to me....just a gut feeling I got from her non verbal reactions when trying to reprogram it. Time will tell. I'm just going to take one day at a time and hope for the best. :)

Hey there !
 

Thank you SO much for the update! You've been on my heart and now I see why!
Sounds like you're having a time of it right now :Noooo:

BUT! remind yourself that your surgery was wayyy beyond just the simple percutanous lead implant......you had bone removed and the whole kitandkaboodle!! Try not to get discouraged at this point! Your body has been thru aLOT.

Plus, you ARE tough :cool:..... that i DO know!

I do recall my rep making a big issue while she was setting my programs that she wanted to make SURE the stimulation didn't get into the abdominal area and produce a 'pulling' sensation...... this kinda sounds like what you are describing about the sensation at your ribs.
She did a simple adjustment in the settings to avoid this.

I know you've already had several re-programming sessions, but I'm hoping it's a simple adjustment they can do to get rid of that 'grabbing' feeling...

Also, which of the 'pulse rate' settings do you find most comfortable? I notice that when I set it to the slower rate, it produces a 'thumping' feeling that can get pretty intense, so i turn UP the rate to get more of a consistent 'buzzing vibration'.
I'm still not sure how to set the "amptitude" parameter, or the pulse width.....maybe these still need tweeked?
So, maybe since you had used the TENS unit a certain way, you may be using settings that are too high for you right now while your body is still fragile and vulnerable from the intense surgery.
Maybe try keeping the stim down pretty low for now until your body gets stronger? I have no idea what I'm talking about to tell the truth, but these are thoughts that are coming to mind as I put myself in your shoes.......
I sure don't want to see you get discouraged.

I just know this is gonna work out for you......it's just that you've been thru the most intense type of implant that I know of, so .......
Dang, I wish you could tolerate pain meds better....at least that would keep you more comfortable while you're working this out.
Hang in there my friend.......you've got a Dr who's really looking out for you.....I'm just wondering about the programming......they'll find the right ones for you, but I sure wish it would be SOOON!

Rae
:Heart:

Thanks Rae!!

You do totally know what you are talking about, and I so appreciate your kind words and support!! Now, who's the one that needs to be talked down! LOL!!!

My doc and I have been trying different pulse rates and different programs so I just have to be patient......not one of my strong points!! It will get better. I just have to remind myself that it's only been 5 weeks! I wish I could tolerate better pain meds as well, but it is what it is. I'm going to focus on the future and getting better because it could be a heck of a lot worse!! The glass is always half full!!!

Take care and God bless!! :Heart:

OMG! I had the same prob. after my paddle lead was place in T5-7 with the Medtronic Rep. Directly after the surgery he was asking me question after question, I literally could not give any answers that made sense, and he made it obvious he was irritated. My husband then took it to the nurse and the Surgeon who did it, needless to say, they flew a diff. one up for the next visit. How the heck do they get paid well for treating patients like crap. You know they'd understand if they were in your place just coming out of this major procedure. I've had my double paddle lead in for two months and just got moved back to my higher doses of pain meds bc the pain is still very much there, it just doesn't last as long. Nice to hear someone elses view point of the rep right after surgery. But, I'm sorry you had to go through it. this is something that is so hard to explain to spouses, family etc. of the life altering situation we are now in. Thus, its a blessing I think to have found this site w/so much understanding and verbal support.

Oh good Deidre!
 

I was hoping you'd connect with kzlrogue! That was the first person that came to mind when i saw your post! Hopefully
kzlrogue will be by soon! She is fantastic!

Thanks to All
 

kzlrogue and Leesa, thank you for your posts.... your testimony as to the benefits and potential detriments to following through with the SCS procedures. I have told my physiatrist would do trial implant and that I would be "in trial" for a period of 7 days. One forewarning I have received has been precisely the issue touched on with Leesa; namely, the restrictions of activity during the trial period.

Before I was injured in a car wreck, I used to be very, well...... upon reconsideration, VERY active. You know the routine, dancing with my wife [oh how I loved that- and I had taken lessons to boot], alpine skiing, hiking the Rockies, riding my now dusty mountain bike many miles a day, and then the more sedate fishing, home improvements [do it yourself style], and the like. I would like to be able to recapture some of those now lost activity opportunities, and it just seems that trying to do some [well, with doctor's concurrence] of those activities even if reigned in a bit would not only be a goal for a patient post-operatively, but a bit "in trial" so as to gain understanding whether in a real life application the full SCS implant would be efficatious.

Gosh, I just wanna get on the dance floor with my wife again.

Well, anyway, thank you for posting,
Mark56 :)

Mark,

I totally hear you about being active before the pain! I was in the military so being physically active was an everyday activity for me. I also use to play competitive volleyball 3 -4 nights a week and on weekends as well as work out in a gym on a regular basis so being sedetary is really hard. My best advice to you during your trial is to have it in as long as you can. I would think 7 days would be long enough to determine if it truly works. I only had mine in for about 3 days. I had a lot of incision pain with the trial so I was not able to be that active. They told me I couldn't lift or twist but they said I could walk and try to do as much as possible. They don't want you to twist or lift because there is nothing really securing the leads during the trial. There was one patient who played tennis during the trial and as you can guess, the leads moved so he had to have them repositioned. My determining factor in deciding to get the permanent was after I had the leads taken out. I could tell a difference afterwards. Without the stimulator on, all the pain came rushing back.....and fast! Now, don't get me wrong. I still had some pain during the trial (minus the incision pain) but I noticed it a lot more after the leads were taken out. My husband also noticed that I walked better during the trial so have your wife evaluate you as well. It's amazing what they pick up and see that we don't because we're so concentrated on the pain.

Good luck with the trial and please keep us informed!! Personally, I would try dancing with your wife during the trial. I would maybe wait until at least the 4th or 5th day into the trial so you have a feel of it and can see if it works for you and maybe something like the fox trot instead of the tango. LOL!! :Dancing-Chilli:

This entire group here is fabulous. I informed my husband of how exciting this is for me. Maybe it'll mean he hears less from me as I've finally found the perfect place where I can explain what I'm feeling and help others.
Thank you for welcoming me as fast and kindly as you did, you have a dynamic energy and very positive outlook that comes through your writing. What strength we all build going through the ups and downs that bring us this far.:)

Thank you for that!
 

Now if ONLY that were true to my REAL life ! :yikes: ha!

It's so great to have you.....I'm so glad you found this forum.
You are the ones bringing it to real LIFE!

Good Luck with everything
We'll be in touch!
Rae:Heart:

And M A R K ! ! !
 

During your trial ! Take HEED to these PROFOUND words of
wisdom ! :Clever:....
When you come home, with all that tape all over your back......
put ONE more bit of tape where your cord is dangling as an extra measure of 'reinforcement' against thy elements that will jump out at you as you pass by .....doorknobs......ect.....
I can guaranteeeee you will snag your cord!!! That extra reinforcement you placed there will make you feel like Einstein didn't have a CLUE when it came to true wisdom....:p
Believe me.

P.S. You WILLL dance with your wife again !
Without a doubt.......

Slow Dancin Swaying to the Music
 

Thank you Klzrogue, I very much appreciate your thoughtful read and response to my post. Yeah, I was into fitness before wreck [I guess that is BW] and was known as an athlete, even though I was a middleaged exec type. I finally gave in to the desire to please my wife, Cleo, to dance and we took lesson after lesson, finally becoming the pride of our instructor. We danced at every opportunity, BUT,,,,, tango and salsa never caught on with me. Swing, foxtrot, waltz, now I could get into those.... and the smiles on Cleo's face. What a gem of a gift to give her after being a klutzy wallflower for so long. I will take your advice on trying something very carefully, prob'ly here in the house so we don't get bumped after a few days of the trial. Just turn on the sound system, and give it a go.

Now, as for your military service, please accept our gratitude for your service. You gave much as you served. How do we know? Well, our youngest son is an Army volunteer enlistee on his first tour in the Middle East right now.

Blessings on you Klz,
Mark56 :Thanx:

On the way to the store
 

Hi Rrae- I found the post, a day late, but not TOOooooo...... late. Will definitely heed the advice about tape. A little more never hurt a thing, and to tell you the truth, I have used an ANDme Interferential Stim with its gummy leads now for years [why did it take so long to get here?] and placing it in my pants pocket I am a frequent member of the JERK club; that is to say, one of those whose leads are regularly yanked by the inanimate but reaching handles of kitchen cabinets. I would far more rather sway with my wife dancing than being JERKED around by the yank of a handle on my leads.... :) ah, well, if only I had layed in a supply of tape long ago. I just did not want the further inconvenience of the putting it on and taking it off.

You are absolutely right though, with the TRIAL I will not want anything to interfere with lead placement!

:Good-Post::Thanx:
a grateful Mark56

Thank you but your son and many like him are the true hero's! I did not serve overseas so I did not have to sacrifice all that your son and others like him have had to do. My thoughts and prayers are with him and his unit as well as all the other soldiers overseas on a safe journey home. I also want to commend you and your wife on raising such an outstanding individual. It takes a special person to be able to endure not only the physical challenges the military requires but also the mental challenges. It proves the strength not only your son has but also reflects the strength the both of you have in teaching him duty, honor, and respect not only for his country but also to himself.

Now, take that strength and give this enemy we call pain a fight it will never forget!! You WILL dance once again with your wife and see her beautiful smile that she deserves to have and you deserve to see! Who knows maybe after the implant the salsa and tango WILL be your thing!! You never know! :winky: