Re: neurostimulation use anybody?

[Guest guest]

Add the stimulator to my list of been there, done that and it didn't help me one

bit. I wish you luck with it because I know it does help some. You should know

after the trial. Just be honest and you'll be fine.

Becky

[Guest guest]

Me too. My doctor is sending me to see a neurosurgion about implanting the wire

since I have rods in my baçk.

Sent from my U.S. Cellular® Android-powered device

deanna wrote:

>Hi. I am new to group. 20+ years diagnosed RA, scoliosis, Tarlov cysts, DJD,

cervical stenosis, Raynaud's, 's, etc. Just saw new pain specialist that

recommended neurostimulation implant for pain control.

>

>Nerve blocks, trigger point injections and narcotics haven't managed pain

lately.

>

>Is there any advice or personal experience anyone could share? I am researching

the device to see if results are what they say.

>Any input would be appreciated.

>Thanks.

>

[Guest guest]

I have a spinal cord stimulator, a Precision from Boston Scientific. It was

implanted April, 2009. The most critical recommendation I can make to you is

pay close attention during the trial period. Unless the process has changed,

the trial period will involve a short time period of only a few days for you to

experience the apparatus, but it will be external to your body. The leads will

be external except for the short pieces that will be inserted at the appropriate

area for stimulation along the spinal column. The stimulator will be carried on

your belt like a cell phone. So unfortunately, you end up making a decision

about a test of a scenario that doesn't really replicate the experience you will

get after the device is implanted.

I had mixed results from the test. I couldn't tell just how much the stimulator

was actually helping or if the procedure to place the leads had dislodged some

of the scar tissue that causes much of the constant pain experience. Given my

situation I went ahead with the implant, figuring the device certainly couldn't

hurt. Also, going forward you can no longer have MRI radiology exams with one

of these stimulators in your body.

A little background on my situation:

I will be 59 in October and have had Ankylosing Spondylitis (arthritis of the

spine) most of my adult life. After years of arthritic degeneration I developed

a stenosis at the L3/L4 region that required a Laminectomy to relieve. The

surgery was done in January of 2005, mostly trouble free but I did have some

bleeding and the surgeon had some trouble sewing me back together. I was

recovering nicely and then pain began to return worse than I had before the

surgery. The pain quickly spiked and numbness in my lower legs and feet came

back along with urological issues. Then the pain became unbearable. I had an

MRI, the doctors told me I had something called Acute Adhesive Arachnoiditis.

You may hear the term " failed back surgery syndrome " . Often times patients

actually have arachnoiditis. A clinical definition of Arachnoiditis is a chronic

inflammation of the arachnoid layer of the meninges which consists of

trabeculae, a mesh of interwoven collagen fibrils resembling tissue paper. In

other words, because of some trauma (i.e surgery, injury, myelograms, epidurals,

dyes, etc) the body initiates an auto-immune response. In turn, a by-product of

this process is a build up of collagen, or scar tissue, at the area of trauma.

The inflammation and build up of scar tissue cause the pain. There is no

surgical solution.

I became a pain management patient following my surgery in 2005. If it weren't

for the guidance of my able pain management physician (an Osteopath by the way)

and the regime of medications that we have worked out together I would not be

able to function at all. In fact, I doubt I would be alive.

Good luck with the stim. I hope it does wonders for your situation!!

P McDowell

ville, FL

> deanna wrote:

>

> Just saw new pain specialist that recommended neurostimulation implant for

pain control.

> >Is there any advice or personal experience anyone could share?

[Guest guest]

I will give you some of my history: I am 75 yrs old. I started having serious

back problems 25 yrs ago. First was a lumbar disk; then a very short time after,

I started having problems walking; one day I tried to get out of my chair and

went down on the floor. I could feel nothing below my waist.

The local Orthopedic surgeon put me in the hospital, where I remained for 2

weeks. They were trying to get me to stand on my feet and take steps. I kept

trying to tell them I couldn't feel anything. Then my husband took me to

University of Iowa Hospital. Within an hour I was in the MRI then on to surgery.

It was a disk at T 10. It had herniated inward and put pressure on my spinal

cord. I have Browns Sequard Syndrome (textbook case, so the young interns tell

me).

I had therapy for a year to learn how to walk again. I have to watch my feet as

I don't know where they are, but I can walk. Not very far. I have had 6 back

surgeries. The last 2 were rods, 5 yrs ago. I have no back pain! I still have

the burning down my left leg that started with the herniated disk at T 10.

A pain specialist tried to put the wire in, but couldn't get it in because of

the rods. Thus I take a load of medicine to cover it up. I had my 5 yr check up

this week. I was telling my back surgeon at the University about it and he is

trying to get a neurosurgeon to take me into surgery and insert the wire. If it

works, it will get me off all this medication that makes me woosy.dopey and

whatever. My appointment is Oct 03. Let's hope it can be done.

Rosie

[Guest guest]

Rosie

I will be lifting you up as the day approaches. My doctor is talking about

inserting one, as well, and 2 weeks ago I went completely numb from the waist

down while in the hospital, holding on to the IV pole for dear life. I hope

this is not a failed fad.

I had my 5 yr check up this week. I was telling my back surgeon at the

University about it and he is trying to get a neurosurgeon to take me into

surgery and insert the wire. If it works, it will get me off all this medication

that makes me woosy.dopey and whatever. My appointment is Oct 03. Let's hope it

can be done.

>

> Rosie

>

>

[Guest guest]

I would advise all cp members to be very vigilant about implanted

neurostimulators. When I investigated this for chronic pain (waist to toes for 8

years now; two thoracic spine surgeries) I was totally unconvinced this was the

way to go for me.

1) there is a special " neurostimulators " group in Yahoo Health- the sum evidence

(all anecdotal) was that while it worked for a few, it didn't for most, and

ended up causing more problems than before, including worse pain, infections,

etc.

2) I investigated the original literature, and support was not there. As an

academic, I have access to all medical journals, so it was easy to see what's

been published in the area of neurostimulators. Bottom line- not much. As of ~

3 years ago, there was only ONE publication that had studies implants for as

long as 5 years (indeed, NS is only a ~ dozen years old), and the evidence

showed that even those who reported improved pain control after one or two

years, were back at baseline level (high pain) within the limits of the study (5

yrs).

3) Medical practice is BIG BUSINESS. The practices make a ton of money to do

these implants, as do the companies that market them (Medtronic, St. Jude). When

I told my pain doc I did not want to go through with NS, it created an uproar in

the office and practice. That same practice is now out of business. So there

was pressure to implant!

Bottom line, there are huge risks involved and little evidence to support that

present day NS technology is satisfactory. It will work for a few people, and

they will rave about its success, and that's what's kept NS in business.

[Guest guest]

Rosie, It saddens me to know those doctors and the first hospital failed you. 

It doesn't surprise me though.  I hope Oct 3 is a magical day.  I know getting

off pain medication and all that other medication would be wonderful.  Praying

for the best outcome for you.

 

Jennette

Rosie wrote:

My appointment is Oct 03. Let's hope it can be done.

>

[Guest guest]

Thank you. I will be very careful about making a decision about it, if and when

they can put the trial wire in place. My trusted orthopedic back surgeon at the

University of Iowa has suggested this. (A pain doctor tried to get a wire in 2

years ago, but didn't want to do a lot of poking and proding with the rods in my

back) He suggested a neurosurgeon might take me into surgery and try to get the

wire impanted.

I have had this burning down my leg for 20 years and have taken a big load of

medicine to cover it for 2 years. It has been great not to have the pain control

my life, but the medicine makes me feel like a zombie sometimes. Thank you for

your imput.

Rosie

westr@... wrote:

Date: Mon, 3 Sep 2012 15:14:27 +0000

I would advise all cp members to be very vigilant about implanted

neurostimulators. When I investigated this for chronic pain (waist to toes for 8

years now; two thoracic spine