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 Once Needles are withdrawn, the leads are actually slightly sutured at the intry point, as the sole piece of system internat during trial is the temporary lead placement.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: