Great trial, but not so great permanent implant.

February 17, 2011

Hi, I'm new here (Patti), and I was in a car accident in 2007. I suffered a Lis

Franc fracture in my right foot, a small fracture at my ankle, and my knee cap

was actually dislocated and had to be put back in place. After 3 surgeries to

attempt to fix my knee (I even had to have the screws removed due to allergy to

metal) and 2 attempts on my foot (fused three toe joints and took a bone chip

out of my ankle), I was referred to a Pain Management Center due to possible

RSD.

I was diagnosed with RSD, and they began with injections in my spine. These

failed, so they did the trial stim. I did have a big problem with lead

migrations, and finally on the last day, things were great.

On Sept 21, 2010, I had the implant. The doc put the battery on my side, not

quite my hip and " forgot " about the migration problem I had. The battery

literally started moving the day after surgery even though I was quite faithful

with the belly band (I wore it out even!!). The battery was actually sticking

out about 1/2 " and I ran into a door knob with it! The day after they turned

the stim on (I think this procedure had the stim off for about a month before

being turned on), I was taken by ambulance and admitted to the hospital because

they thought I was having a heart attack. This turned out to be feed back from

the stim going into my chest wall. I did of course try to tell them this, but

they wouldn't release me until I had a stress test done with the stim off. It

was odd, but my doctor that did the implant did not come to the hospital. I

followed up with him after I was released, as well as my MedTronic Rep. It was

decided (finally) that I needed to have a paddle (surgical implant of the leads)

and that the battery did need to be moved (at this point, it had moved to a

position where the rep couldn't even communicate with it).

So, on Dec 2, 2010, I underwent another surgery. This time, it was done by an

orthopedic surgereon with my doctor and a medtronic rep. The device was to be

on immediately after surgery, and everyone assured me that the paddle will

prevent cross feeding or migration. Well, the device worked until I moved.

What was suppose to be on right away ended up being about a month before I could

turn it on.

I feel worse now then before. The pain, tingling, numbness, swelling, horrible

cold water running down me like sensations, etc have increased. I can barely

hold things, my whole body shakes, my back kills me now, I can feel the paddle,

the lead wires, and the battery. If I go outside or even just get cold, I

literally have to use a heating pad until the rest of me is sweating just to get

warm again. The coldness has spread, everything is just awful. I get the

sweats really bad - but it's funny, the only thing that gets sweaty is my head

while the rest of me is literally cold to the touch.

The doctors have started injections again to try to help. The first one didn't

work (last week), and I really don't know about the next one scheduled for next

week. I read that the injections (cortisone) can cause bone errosion and all

sorts of other lovely problems. I'm desparate - does it ever get better? Am I

going to have to move leads implanted now to cover the others areas affected?

Am I alone?

Thanks for letting me vent, please someone give me some hope....

Patti

February 17, 2011

Patti,

I am also new to the group. My permanent stim implant was Jan 11th so I am not

experienced with the unit but I did recognize the one symptom--feeling like

water running down my leg. I am glad to hear someone who undersrtands how this

feels!

My stim was turned on during the implant to be certain if the placement was OK.

I am " sway backed " and the doc had a challenge feeding the wires up for the

temp stim. I had great relief of the pain that is worst when I sit up in the

morning until the spine and gravity get their act together. Right after the

implaant that pain was GONE! I am now having somewhat more pain in the AM but I

have learned to take a pain tablet when I first wake up in the AM and wait about

an hour, if I can, to sit up. I keep a bottle of water and a couple of the pain

pills beside the bed for this.

I suspect the wires have moved a little for me, too, but hope we can adjust the

program to help when I see the doc next week. I have 3 settings in one

group--one is for left leg, one for the right leg, and one for the back. I also

have bad knees. I can adjust the strength independently for the three nodes.

Perhaps some of the problems you are having can be aided by new programming. I

know what you mean about the chest wall activity. The first time they were

setting the programs, they got to my ribs and it made it hard to breathe due to

the diaphragm being strimulated (paralized). When I went for my preop, they

refused to do the surgery until I got an OK from my cardiologist. I had an

abnormality in the EKG. The cardiologist thought I might have had a silent

heart attack and did an echogram but I have not heard what the results were. I

guess it must not have been too serious as he OK'd the implant. I see him next

month. I wondered if the abnormality might have been caused by the stim going

so high.

Even though the pain has come back partially, I am still greatful for what it

has helped and hopeful that it will get better in time.

I wish you better luck. Please keep us up to date on your status. If you need

an understanding shoulder, by all means contact the list of me directly. I may

have drooping shoulders but they are still available to anyone that needs to

vent.

Sue Wegert in Indiana

February 19, 2011

Sue,

I'm glad I'm not crazy with the water running feeling! People looked at me like

I was insane. It was hard to explain and get them to understand what I was

saying.

I am glad that your stim is providing you relief. Have you found though that

after the stim is turned off you still experience the feeling and tremors all

over? I too have three programs, yet they are still hard to get to go in to the

targeted area even with the paddle. I have also found that I feel even more

tired some days when I have it on for a long period of time. I am wondering if

I am " over stimulating " and it is causing the fatigue.

I am a bit concerned that since my orthopedic surgeon who performed the surgery

where he moved my knee cap back in place and removed the screws after I

complained a lot said that he found I also had extremely soft bones. I told

this to the orthopedic surgeon that implanted the paddle in my spine, as well as

the Medtronics rep and my pain management docotrs of this problem. They assured

me that they had just cut away a few pieces of bone of my vertabrae to implant

the paddle. I just hope that my vertabrae is stronger then my other bones are,

but am very scared that the paddle might come loose and cause serious problems.

I also have more cracking of my neck when I move my head. It is super annoying,

as I have never liked bone cracking or even popping knuckles;).

I'm scared of the cortisone injections that I had previously, as well as the

cortisone injection I am scheduled for on the 23rd. I read that cortisone can

actually cause the bone, muscles and tendons to deteroriate. I am just at a

loss right now. I feel everytime they touch me I am getting worse.

I'm sorry again for this vent, I hope I haven't scared you with my problems, and

am again very happy your stim is working. Thanks for replying and thanks for

" listening " . I will definitely let you all know how my next appointment goes:)

Take care and keep looking for that rainbow!

>

> Patti,

>

> I am also new to the group. My permanent stim implant was Jan 11th so I am

not experienced with the unit but I did recognize the one symptom--feeling like

water running down my leg. I am glad to hear someone who undersrtands how this

feels!

>

> My stim was turned on during the implant to be certain if the placement was

OK. I am " sway backed " and the doc had a challenge feeding the wires up for

the temp stim. I had great relief of the pain that is worst when I sit up in

the morning until the spine and gravity get their act together. Right after the

implaant that pain was GONE! I am now having somewhat more pain in the AM but I

have learned to take a pain tablet when I first wake up in the AM and wait about

an hour, if I can, to sit up. I keep a bottle of water and a couple of the pain

pills beside the bed for this.

>

> I suspect the wires have moved a little for me, too, but hope we can adjust

the program to help when I see the doc next week. I have 3 settings in one