Yay your trial is all set-up! I'm sure you are hopeful and ready for this step. I know I am for mine. This weekend ill post how mine went. I'm the type of person to "research" things and I youtube SCS and watched a few videos and the all "seemed" like there is nothing to it. But for now all you need to do is get yourself ready!


Ashley

Ashley-

Thanks for your support... It seems I keep seeing more and more similarities between us- I also am the type to research (almost to the point of obsession at times, but I try to keep myself in check). Anyway, I've also watched youtube videos about it, and you're right, it doesn't seem too bad.

I am very excited for you and your upcoming trial! I'm praying for you, and for great success/pain relief! And I must admit, I'm grateful to have someone to hear about so soon before it's 'my turn'. I'm very grateful to you for being willing to share your upcoming experience. Hopefully, we can lean on each other, and if you ever need it, that I can be of support to you throughout your journey, as you have already been of such help to me at the start of mine

Thanks again, and best of luck to you on your trial- I look forward to hearing how you're doing this weekend. I'll be praying for you! (as I'm sure many others will be also).

~Colleen

Hi Colleen
Good luck with your up coming trial.. Mine was a year ago last May. My trial started on Mon. and was out Friday. Removal was the easiest part. I was standing and leaning on the exam table. My Dr. came in to discuss the results. His nurse came in and said here goes, with a slight pull the temporary lead was pulled down and out. Absolutely no pain. Hardly new he had it out. It kind of reminded me of the Berlin of dental floss pulled through your teeth. You just feel it as the last bit comes out.

My trial implant was done as an out patient procedure. In about 6am and home for lunch.
The sedation is light. My pain is due to abdominal pain from sphincter of odi disfunction.(pancreas). My pain is very specific in my upper gastric area but it is intermittent. Both the Dr. and rep were challenged to get the stimulation to such a small specific area. Make sure you pay close attention to where you feel the stimulation so that it covers the entire area you need. Do be afraid to tell them its not right. My Dr. said to try and do as many things that you normally do so that you can feel the stim during different movements.

I too have 2 labs who require lots of attention. I got to be pretty good at doing squats to get down low. Make sure to have a grabber for reaching things above your shoulders and down on the ground after implant. Things will always be out of reach. Before your implant go through your house and bring things to counter level that you use frequently. Remember no reaching above your shoulders, no bending, no stretching, no lifting above 8#, no twisting.
Its so easy to forget when the pain eases after about three weeks to try and reach or twist or bend. Many have used a back binder that their dr. gave them for extra support.

My doctor was very cautious about infection and waited two months between trial and implant. He didn't allow ice for relief of pain because he didn't want any moisture near the incisions. I found sweat pants and yoga pants to be very comfortable while healing. Good Luck.

Sandy Kay

Having my trial lead taken out was no big deal at all Colleen.

Basically my Dr was chatting away taking off the bandages etc and next thing I knew he said 'ok all done'. I felt a slight tug but that was it!!! Honestly nothing to worry about.

The only downside for me was then waiting for the permanent implant to be done. That took 4 months. But that's cos my Dr was on holiday etc.

So don't be stressing out about it. Just try to relax and hopefully all will be well and we will be cheering you on for the permanent implant

Jackie

I have really been grappling telling this part of my story here but...perhaps it needs to be repeated.

My trial was, as I stated, a breeze. Getting it out wasn't too fun but the discomfort of having the 2 leads pulled out was pretty short-lived.

My pain doc is an anesthesiologist by trade (I believe most of them are) and for the trial she actually did this in-office and had a nurse anesthetist - and she TOLD the NA how much 'knock-me-out' to give me...I remember the familiar feeling of the slight burning sensation going up my arm from my IV and - then I was out...till being wakened for the placement part...then I was back to sleep.

However!!! The implant surgery was QUITE a different story.

I had to choose a surgery center that was 'in network' with my insurance - glad I did, I had hit max-out and it didn't cost me. Had I gone where my doc wanted me to I would have had a HUGE co-insurance bill to deal with. One main problem is this center is not as 'friendly' to my doctor as the preferred one where she has a tremendous pull, even to the point of directing them on such things as anesthesia for her patients. So, I ended up with an anesthesiologist that she, as I found out later, didn't like very much. This schmuck pretty much kept me awake for the entire first part of the procedure instead of putting me into a MUCH deeper sleep where I wouldn't "wiggle" (again, my doc later said she didn't care for this guy and she KNEW I was too awake because I was moving too much).

I felt EVERY SINGLE THING they were doing to me during implant and he didn't have to 'wake' me at all for final placement. I remember everything so vividly and I rehearsed some of what my doctor was saying during the surgery, back to my doctor and she just sat and nodded her head - I should NOT remember all that.
"Turn, turn .. turn ... okay STOP
Turn...turn...STOP"

At one point I said to her,
"I sure wish I could watch you - wish I had a big mirror"

Oh, but the PAIN - that was rough. Now, once placement was secure, before she actually cut me open (incisions) the guy did finally put me into that deep 'twilight' where you don't remember a thing but you're not under general.

I don't tell this story to scare anyone...bottom line, ASK QUESTIONS. Ask your doc if he/she KNOWS the person that'll be tending to your comfort. If the anesthesiologist calls you the night before (like he did me) ask HIM/HER pointed questions. I did ask and he told me, "Oh, you'll feel some discomfort" and I didn't realize this meant I would feel AND remember EVERYTHING. And - it's 100% within your right to say, "I'm sorry, I want a different anesthesiologist" ... rest assured, they may have to reschedule it and that's not good but....you don't want to go through what I went through!

Andy-

How awful! I'm so sorry this happened to you! I had a similar experience with my bunionectomy foot surgery in which I kept waking up and was in extreme pain (in my heart of hearts, I believe that this is what led to my RSD, but that's beside the point).

Anyway, I appreciate you sharing your story, as I will definitely be extra cautious w/my doc to make sure that my anesthesia is performed correctly. (I'm told that it will be general anesthesia for the implant, so that's def what I expect from them!).

Again, I'm sorry this happened to you, but I appreciate your sharing... as to save myself and others from the same fate. I am very grateful to you for doing so.

~Colleen

One thing that happened to me that was horrible at the time, but has been great since is an almost fatal anesthesia complication.

On February 3, 2012, I was implanted with a loop recorder due to syncopal spells. These were later attributed to RSD so it was a needless surgery, but it was a 15 minute under the skin monitor that they give you twilight anesthesia so you're awake but not. Well I had a laryngospasm and almost died. I was completely put under and entubated. For an under the skin monitor placement.

It was really scary, but it caused them to be super diligent with anesthesia from that point on. I'm sure when it's time for battery replacement they'll do general just because of the complications. Or at least be careful. So that helped. I'd rather be out completely than remember anything, but that's because the two times I haven't had general, I had a laryngospasm. I don't know what drug they use, but my body does not like it!

I'm sure everything will be fine!!

TK

Hi Everyone,

I just joined the forum and I have been reading the various posts by everyone.
I think that my case might be very similar to that of Sandy Kay.
I live in the greater Los Angeles area and have suffered from chronic pancreatitis since my gall bladder went bad and was removed in 2004,
I suffer from Chronic Pancreatitis, Sphincter of Oddi and Crohn's disease.

My digestive system is a train wreck.

Surgeries, and Procedures, only give me relief for so long. I have relied on pain medication to manage my pain.

Due to the aforementioned, I have been on a feeding tube since March 18, 2013 when they shut my pancreas and stomach down.

The docs were hoping that within 6 months I would be able to eat again with no pain; however, that was not the case. I have lost 60 pounds (which I did not need to lose - I could have lost 10 to 15 and been fine) and I have no energy or any quality of life since being on the feeding tube.

At this point, my doctor referred me to a colleague of his who is a pancreatic surgeon who is trying to think outside the box and he referred me to the pain management group.

The pancreatic surgeon told me about a pain pump, so I did a lot of research about them and found many articles that discussed it's use for the treatment of pain associated with chronic pancreatitis. However, when I visited the pain management center, the physician brought up the use of a spinal cord stimulator in addition to the use of a pain pump. He seemed to be in favor of the SCS hence I started doing research about their use in the treatment of pain assoiciated with CP.

I have not had much success finding many articles about this treatment of pain from CP.

Then I ran across the NEUROTALK site and the posts of Sandy Kay.

I would like to learn more from everyone and also speak or email with Sandy Kay about her experiences as they seem very similar to my own.

I am scheduled for the first epidural relating to CP in the next few weeks to see if I will recieve any relief.

Thanks for listening and I will be attentive to this site.

Regards,

Richard

Welcome to the forum! Glad you found us
I'm so sorry for all these struggles you've been facing. You've certainly come to a great place for support tho!

In looking at Sandy's visitor page, she hasn't been logged on here since August. I'm sure she'll check back eventually tho.

Since your situation is rather complicated and involving internal organs, I'm real sketchy on knowing much. You seem to have good doctors and I'm sure they are looking out for your best interest.
I know that there are those who have had success with SCS for internal pain. The SCS effect would be a stimulation feeling. I describe it as being like a cat purring . The only way to know if this would be something you could tolerate of course would be to do the trial implant.

The pain pump has been very effective to those who have pain dispersed throughout the body, rather than pain that is more localized to a certain area. Here are some references to posts that other members have shared regarding the pain pump.

Pain Pump member references:

Here is the testimony of Bobinjeffmo's pain pump:
http://neurotalk.psychcentral.com/post701979-14.html

Here are some post references, both good and bad, to hopefully give you a realistic array of experiences:

http://neurotalk.psychcentral.com/thread144925.html

http://neurotalk.psychcentral.com/sh...945#post841945

http://neurotalk.psychcentral.com/post778075-7.html

Another thing you can do is use the "Search" feature near the top of the page in the bar that runs across the screen (3rd option from right). Type in 'pain pump' and it will bring up prior posts and discussions on these.

Many doctors prefer the SCS over the PP because the PP requires getting refills on a regular basis. When I asked about a pain pump, My doctor said "I don't do the pumps because that would mean we'd have to be 'married'

It's not unheard of to have both a pump AND the SCS. It sounds like this is what one of your doctors is contemplating.
There are several members here who have 2 SCS's to get a broad range of coverage.

There's lots to think about. Lots of questions too! so feel free to ask anything at all. That's what we're here for.

Rae

Hi RRAE

Thank you for the great response.

I really appreciate the time you took to compose it and provide me with a list of links to search.

i wil do the research tomorrow and if I have any questions, I will ask them. I am sure there will be many questions.

Thanks again.

Richard