Day 2 of SCS Trial
 

Had the trial installed yesterday. Stayed at hospital most of the day, came home last night. During the surgery the leads were inhe right place but haven't been since. Turned it on last night., no luck. Sensations still in my back and buttock. Rep thinks the leads moved while they were transporting me back to my room. I have an appt tomorrow for an xray to see where they are and how to fix. Anyone know about this.? Will I need to have the procedure again? I'm in so much pain I hats to think I'm wasting time in pain without being able to use it. I just want it fixed asap., anyone know how.?

How disappointing!
 

Hey Kelly! Been thinking about you. So sorry to hear that you are having this issue. I did not experience the leads moving during the trial, my dr taped everything on the outside down really well. I had my permanent move, which is why they had to switch them out for paddle leads.

I have read a few posts about this happening, so hopefully someone will chime in and tell you what happened with them.

Hope you get some resolution real soon. Keep us posted!
Nanc
:hug:

Hi Kelly
 

Hi Kelly :)

Im sorry to hear that you arent experiencing the sensations in the correct places. How long is your trial for? Mine only lasted two days , put in on a Wednesday and out by Friday. If you are going in tomorrow for an xray it will show exactly what is going on. Im sure they can fix them so that you wont be in much pain, I hope so. At least you are having it looked at and not waiting to go back once the trial ends.

Good luck with it

Jackie :)

I'm scheduled to have it taken out on Tues. But since its in a bad place I'm sure it will be sooner. Maybe tomorrow. I just want it fixed so I know if it works or not. If they do the procedure again will they do it right away or have to wait.? I scheduled time off now and it will be hard to do again in a month or so. Plus I might be too scared by then.

Hi again Kelly. I would think they would do the procedure right away. You need to really express your needs to the dr. Make sure he knows that you are off now and want/need to complete your trial now. And if he says he wants to wait, tell him exactly how you feel about that. My dr moves rather quickly on procedures we decide on and listens to me in regards to my needs - work schedules, etc. He works really well with me. I hope you can get the same results from your dr.

Let us know what happens tomorrow!
Wishing you the best!
Nanc
:hug:

My Leads Shifted as Well
 

I'm sorry you're dealing with this. My trial was for 8 days and after 5 days, they shifted and stopped working. In fact, it only worked in my lower legs when I need relief in my lower back, butt, thighs and calves. They said had they shifted earlier, they would have went back in to move them.

Sending many, many happy thoughts your way!

Kelly,

The same thing happened to me. My doc said it just needed tweaking so on the third day after surgery they fixed it. It really was not that bad. Nothing had healed so the pain was about what you would expect from an invasive procedure, (nothing compared to my revisions later). I had built up a tolerance to the narcotics I was taking so my doc switched meds and upped them and that helped a lot. I also slept in a recliner with lots of pillows to prop me in more comfortable positions.

I don' know if it is standard procedure to do this right away or to wait, but I was working at the time and was on spring break so I had to get back to work.

My trial was supposed to be for eight days but it stopped working on day six so they took it out. My doctor thought that was enough to call it a success.

I did develop an infection but my wife spotted the signs so we jumped on it right away and it was no big deal. I only needed a few extra days off from work.

Hope you are feeling better soon!

Hi James. Thx for the info. So to fix the lead placement they had to do the surgery again.? My back is so tender the thought of that scares me.how long did they wait to do it.? What signs of infection did uh see.? As for the incision it's totally covered so no one can see if it's red. I'm so upset cause it hurts and I haven't had any use of the device.

Hi Kelly- Trial
 

This is bizarre that the leads were not sufficiently secured to prevent shifting during the Trial. Gee Whiz, if doc takes the goll darn things out now you will never know whether it would work or not. It is as though sloppiness on professional parts have left you wondering..........

Seems to me they should place you back in the OR and re-secure the leads on proper position then tape the h e q q out of your back to prevent movement of the wires...... Yeah, I know it means trying again, but striking while the iron is hot is what gets things accomplished and provides you a recent evaluation. You can IN NO WAY MAKE A REASONABLY WELL INFORMED CONSENT TO IMPLANT DECISION on the basis of this faux pas.

I would DEMAND to have it done properly so I could evaluate it, rather than be told make a decision based upon what you now know, which is absolutely nothing.

Further, watch for infection as Trial nears end..... I had a whopper of infection with all of this leaky pus which, while wearing a red polo shirt, made people think I was bleeding out. What a soaker..... so I had to overcome the infection. The D A M insurance company did not want to pay for biotics because it could have been a fraud attempt to treat a sinus infection. B S and that is that. So, I paid for the ding dang antibiotic and the insurance had to cut a check to me for their B S. I am certain their B S was oh so much more efficient than the possibility of having a patient try to squeeze a sinus infection treatment in on a work comp case. I shoulda just let the infection go as long as they refused to pay for the med, then they could have paid for my hospitalization for runaway sepsis of the spinal cord..... or something worse. So James is right about keeping a weather eye on infection of any sort around where the Trial leads enter your back.

I am prayin you get this sorted out.
Mark56:hug::grouphug:

Hi Kelly,
Sorry I did not reply last night. I spent some time outside and all that fresh air an it put me right to sleep.

Yes they would basically have to do the procedure over, but there is no scar tissue as in a revision surgery of the permanent stim.

My infection was caught early. I was feeling quite lethargic, and running a very low grade fever. My incision was feeling very angry, in addition to the pain. My wife trotted me off the the ER, we did not wait until morning. As Mike said, spotting the infection is all but impossible and it can spread very quickly and get very nasty. If it had not been for my wife's insistence, I would have waited it out.

I don't know if you can blame your doctor for the difficulties. My back was tapped up like a mummy and I still had the same thing happen.

If you feel this is doctor error, as Mike has suggested, I can't imagine letting him have another go.

What I have found through my entire experience with my Spinal Cord stimulator is the best guidance in decision making should come from that little inner voice, not from anyone else.

Hope you are feeling better very soon!!!!!

Re-Visiting the Trial
 

Dear Kelly-

1. Forget whether this is offered as advice, for it is not, and I attempt not to sway you or anyone, as I offer information.
2. Taking into account you wrote this is Trial procedure, if you are in the USA, the manner and method of a Trial is through large gauge needle pokes, the insertion of leads, placement of them under fleoroscopic constant perception by doc, then withdrawal of the needle once verification placement is good through a temporary hookup of the system to attempt verification the target zone was achieved.
3. Once Needles are withdrawn, the leads are actually slightly sutured at the intry point, as the sole piece of system internat during trial is the temporary lead placement. The sutures are intended to provide the retention of the leads as placed for your Trial.
4. All mechanics, the wires and temporary generator are hooked up to the leads, and the rep behins some temporary program install on the spot as you lay in the OR while the surgiical assistant tapes the gauze covered entry point very securely.
6. All of the wire route down your back to the temporary waist belt you will wear are tapek into place so the precious wires do not waver while Trial is underway.
7. For me a comfy plush belt was the end of line of the Trial system, as teh belt produces the repository of the temporary generator, charged up enough you will not have to charge during ehw Trial week.
9. My infection erupted from one of those sutures to hold the temporary placement of the leads. It was arrested by antibiotics. Then delayed my implant after the hugely successful Trial, but then you know that if you read my Thread.

James appears to give a go regardin what I said pertinent to fault of lead migration. So, just forget I am a lawyer for all of this post, push it out of your mind, and remember, I, too, am a patient. Regardless of fault, The Trial has, for some reason gone wonky, and needs a possible reset to lhe leads so you can experience a Trial fully. This is not to say you require major surgery is your Trial began as I described above, but another OR bisit to reset the Trial leads if migration did occur. How else would you develop an understanding whether the device works"

Speak with your Doc if migration occurred. Speak not caring about why the migration may have occurred, and focus on whether you may receive the benefit of an actual Trial if the leads presently inserted did migrate.

Potentiality for lead migration is precisely why Docs urge great care during Trial- give the patient a longer better Trial experience by underscoring restriction of movement during Trial. For me it was a fantastic trial and I anguished over the forthcoming removal of leads and programs I knew worked.

Trial well done was teh effective means of developing a fully informed patient perspective whether the device could help me, and it has helped wonderfully, far better than my perfect Trial.

That is it for now,
No combat here, just honest aids to appraisal whether you have experienced a Trial for all it is worth. Go for yours as well if Doc concurs.
Only my lonely perspective here,
You cannot make a decision whether permanent implant based on your current knowledge,
Prayin,
Mark56:hug:

Kelly
 

I wasn't here yesterday, so by now you've probably had your appt. I am hoping and praying that your team took the necessary steps to get this back on track. I am SO sorry this hasn't gone as smoothly as it could have, but you know, for some reason, some of these have bumps along the way and I hate it that this has happened to you.
I'm surprised that the leads moved so soon. The good thing about this is that your Dr is getting right on this. The xray should show exactly what's going on. Be sure to speak up about the discomfort you are in and they should make you as comfortable as possible.

You were probably in your 'twilight daze' when they first turned your unit on in the OR with the rep, but can you recall if you were getting the stimulation to the right area at that time? If so, then that's a good sign, even tho it was so short-lived.

Very anxious to hear how you are doing today.
Hang in there ok. You're going to get thru this :hug::hug:

Caring & praying
Rae

Hello all.

I had my appt today. A Rep from Boston sci was there. She hooked me up to her machine and wked. With both leads. I had some sensation in my foot for the first time since the hospital but it was very mild and covered my whole leg. They did the xray and said it was still moving due to my young age any large epidural space. Tried to re-position but it was very uncomfortable based on how close to the nerves it was. They took the stimulator out and said we could try again Monday. Not happy at all about this. Back just started to feel better and now we have to start over,? It just sucks. Didn't plan on this at all. He said he will secure the leads better this time and keepme in the hospital longer to make sure they stay in.place. cant sleep as u can see from the time of this post. Emotionally I'm fried.

Thank u tor all of the feedback and well wishes. I'll keep u updated.

Take the opportunity to stay in if you can .. You can totally relax and if you feel the slightest bit worried about anything, the staff are at hand.

Hope this gets sorted soon.

Another go
 

This go was so brief and not functional, you can attain that best possible Trial if they are more attuned to your need for more care in securing the leads, perhaps you will not suffer migration and can feel the intended Trial effort to allow an informed decision on your part whether the permanent stim is worth the bother.

Do realize the permanent implant, if surgery provides you a bugaboo about post surgical pain, is for real with incisions and the like. Whereas the Trial is accomplished with a large guage needle through which the leads are passes for placement, permanent is an incision at the stim generator site, an incision at the laminectomy site if paddles are emplaced, and a tool pulled through subdermally between both in order to draw the wires from point A to point B to hook the system all together. It will hurt from the cutting and tissue disturbance, but then surgical pain is transitory and usually gone within a matter of a couple of weeks,

May all be well with you,
Mark56:hug::hug::grouphug:

I sure hope it's good enough you can do a valid evaluation. That injection site hurts badly for about three days. I'm glad I had a week for the evaluation. I was able to do a serious test drive.

I can't believe it but I think my leads moved again. I had the ²nd trial implanted today and I was able to get the feeling after surgery but lost it by the time they moved me to my room. My Rep will be here in the am to re-check but it isn't looking good. I doubt I will try again.what would keep them from moving a third time? I'm so discouraged and feel like this was a waste of time and energy.

Any ideas on why they keeping moving so fast and what the doc can do to help them stay? I would hate to end it like this w not getting a true chance to exp it. In that case; the perm one is an automatic no.

Well ..... only thing I can reckon
 

Is you might need to be treated as carefully as a prospective ER patient with neck or back injury and transferred via back board so you are not susceptible to movement at all. I have seen firemen do it for our daughter when an over OVER aggressive team from a local high school slammed her to the floor, bouncing her head. Oh,,,,,,, their coach was so proud..... and ours was thrown out of the game for reacting to the slam. But those firemen treated our little one with especial care.... just in case [maybe such firemen care is the sort of movement from OR to room you need since wires seem to move.........

I dunno, just a thought.

Oh, and it was good I was away to the hospital, because a certain ref and I were THIS CLOSE to over 200 lbs of furious Dad tearing that man and then the opposing coach limb from limb. No one treats my little girl that way and gets away with it. Yeah, I would have to deal with consequences, and those two people were collaborating in allowing serious damage to players. The crowd should have gone to the floor and scrubbed the game, opposing team, athletic supporters [yeah, a smelly undergarment] and all. They were guests and they tore into our team that way. Didn't realize I was still so worked up about that and it was four years ago.

Prayin for ya,
Mark56 all of the time prayer warrior and sometimes grizzly bear of a Dad

Hi Kelly,

Please keep your spirits up. With CRPS we all take a journey, some treatments are successful and some not. Maybe asking for ideas on a forum regarding what the doc can do to fix this is an alert.

There are still other treatment options open to you, some with less risk, given your CRPS and future hope of pregnancy, and better odds regarding long term pain relief. A second medical opinion can never hurt.

Hope you are feeling better very soon.

Oh my, Kelly....

I'm so sorry. At this point, I'm sitting here scratching my head at your doctor.... :Hum:
I've never heard of this happening....twice before you even get to your room. wow. This is beyond discouraging.

I would highly recommend going to another doctor for another opinion if you truly want to pursue this. Be sure to ask how experienced he is.
I can't think of any possible explanation for this. It certainly can't be anything you are doing.

My heart truly goes out to you. I'm real curious to know what your doctor has to say this time.
I'm really sorry Kelly...

Rae
:hug:

On final update for all of you out there. Didn't want to leave you hanging after you were so thoughtful to give me such great information.

After the 2nd attempt, they removed the SCS last Friday. I had it in for 5-days. The leads continued to move throughout the whole week and on the rare occassion I was able to get the sensation in my foot, I had it turned up so high, it actually effected my entire leg and was very distracting and borderline uncomfortable.

Since I didn't get the chance to truly experience it, I'm not going to move fwd with the perm implant. It's just not for me. If anyone is considering a trial, feel free to PM me and I would be more than happy to share my exp with you. Although it was unsuccessful for me, the sensation was a wonderful feeling and I can def see it helping many people.

I talked to my doc about next steps and he didn't have any recommendations off hand on the spot. I got back the beginning of May for a Rx refill and check-up. We'll see what he says then but its not looking very promising.

Physically I'm about 98% recovered, emotionally is another story. Knowing that this could be the end of options and the overall feeling of failure of this is too much to bare at times. I'm too young to give up now but I don't see a light at the end of the tunnel anymore. Some of you have mentioned the TDS thing but I'm not open to that. Some options are a match and some are not, that is NOT for me. I'm going to see my PCP tomorrow to see if she can help me with my anxiety/depression meds and something to sleep. For the last week I have had a really hard time sleeping and my anxiety/depression is increasing. I will cry at the drop of the hat and stay in the bed all day. I'm in a funk and need to get out. I'm also going to ask her for a recommendation to go see a counselor so I have someone to talk to that is neutral. Hopefully she can help.

Thanks again for all of your help and input while going through this process. I truly appreciate it and if there is any info I can provide in return, please let me know.

Hi Kelly! I have been thinking about you and wondering what was going on with you. Thanks for updating us.

I am so sorry to hear that your trial was so unsuccessful. You really can't get a true sense of how the SCS will work when the leads move around like that!

While I have great support in my husband, I go to a counselor once in while. She is impartial and gives a different perspective...it is helpful! I hope you find some help soon, with both your pain and anxiety.

Take care,
Nanc
:hug:

Hi Kelly,

I might have missed this earlier - so sorry if this has already been answered....but is your pain only in your foot, or throughout your leg? The reason I ask this is it is extrememly difficult to cover just the foot. The way that most Doc put in leads is referred to anterograde, meaning the leads are inserted in the upward direction - and the only way to get converage to your foot is to hit your whole leg.

Conversely my doc is one of the few who does retrograde lead insertion (which is also technically termed spinal nerve root stimulation) - specificly for people with CRPS or peripheral neuropathy in the feet. I have 1 of each - ie 1 lead placed in the normal anterograde fashion to cover my whole leg if needed, and 1 retrograde to fit just my affected foot. If you have it in your heart to try again, find someone who will do the retrograde method. It has been amazing for me :)

Dearest Kelly....
 

Thank you so much for this update. You're right, it really means alot, especially since you've been thru such a time of it. This has really been a roller coaster and I feel for your depression and anxiety. I suffer both as well. I sure hope you choose to stick around and feel free to talk about everything. We have a great forum specific to these issues and I hang out there from time to time....but you've really landed a special place in our hearts because of your experience, and the fact that you didn't run the other direction when your other thread turned so ugly (i swear that has never happened here before :o).
It would really mean alot to have you here, even to share your experience with newcomers......ok, have i resorted to 'begging' here?? :rolleyes:

Anyway, a counselor is a great idea. You and Nanc are so right, they come from a neutral standpoint and it's very helpful to feel so uninhibited.
Please know that you've still got a lot to hope for. We don't know what is around the corner waiting to happen in our lives. I admit that when I was at my worst down and out, I began to get suicidal ideation. I hope that you find someone to open up to before that dark cloud tries to get on you. When there seems to be no way out and no light in sight, it's very easy to begin to feel this way. You are stronger than you think, Kelly......

I'm so glad you've come here. You are a true blessing to know...

:hug: Rae :hug:

Dear Kelly,

You may be down but you certainly don't sound out. You are right not to give up. Counseling is a great idea to get you back on track. At one time I also felt there was no hope, but there always is, especially when you are so young.

I found that counseling and meds enabled me to feel more hopeful and think more clearly, which is what we all need to do to be the best advocates we can be for ourselves. Instead of seeing things as the end I was finally able to see that I would just need a new path.

You will find a path too. Please don't despair!

I hope counseling will help. I have an appt w a psychologist tomorrow. I'm going to be meeting w her for therapy sessions and a seperate psychiatrist to manage my meds. They both work closely together and are out of the same office so it should be a good partnership. I'm a little nervous for tomorrow but I'm hopeful as well. As we all know its not easy to talk about all our pain and emotions. I hope it will be therapeutic. Time will tell. I will start a new post with an update. Thanks again. U all keep me hopeful for a better tomorrow.

Good night to all.......

Dear Kelly
 

A bright star who brings a fresh breeze to our neck of the ether woods..... [come to think of it, I remember very well the ether "taste" when at six I had tonsillectomy....... there I go again...:o]

I'll beg right along with Rae, encourage along with James, support along with Nanc that today is only the first day in the rest of your life!!! What new wonders will tomorrow bring!! Imagine, just years ago, there was no technology such as we now discuss; HECK, discussions like this could not even occur a few years back [ever grateful Dr. John]!!!

So, yesterday we learned I did not have CRPS, no bone cancer, not the heebie geebies, just good old Ben Franklinesque chronic GOUT of the lower legs and feet. HAH!!! Well, stim does nothing for that. Additionally, that right arm I have been complaining about.... well, the nerve is on its way away down south in dixie..... I no longer have grip in my dominant hand, the whole arm hurts like a migraine all day every day. I am not given hope for the arm.

BUT, I have a good left arm, so I can learn to write my signature with that one. There is a bright side. Somehow, somewhere there is a bright side in your situation...... AND I am feeling So Very Sad the Trial just could not be done for you, precluding the attempt at a permanent stim implant. I pray for you dear Kelly..... you are on my mind.

A counsellor is a good approach along with the meds to control depression and anxiety, and boy howdy do I KNOW THAT!! Right Rae? Fiona? How well we remember those dark days and nights. Nights I lay awake and awake wanting IT all to end. I am so glad God jumped in the middle of my funk, or I would not be able to deliver these words to you.

Somehow there will come to be a way to work with and in spite of the pain you live. Yes, we all live pain as you well know..... each in our own way. Pain may be allowed to swallow up that light at the end of the tunnel OR convince us it is in fact a train racing in our direction..... BUT we can demand to live our best in spite of the D A R N E D [sorry Dr. John] pain. I really and truly wanted to swear there, but I have not learned Eva's way around that dang fooled censor thing:D:D

Kelly, you have my deep respect for your strength of will, determination, perspective to recognize warning signs and seek out help when you need it most. YOU demonstrate a deep well of character worth there!!

My prayers are with you in this particular quest,
Yup indeed,
Mark56:grouphug::hug::Heart:

Indeed....
 

No exaggeration there, Mark :( The worst part about those dark days was when we 'quit' hearing from you......
You literally were at the edge of a cliff of life or death.....the devil on one side of you holding a weapon, and [thank GOD] the Lord on the other.

Never again. Ever.

Rae
:smileypray: