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SCS Trial Scheduled!

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Unread 11-19-2012, 01:44 AM   #31
LagunaErica
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Default Also Having Trial Soon

I will also be having my SCS trial in a couple of weeks on Nob. 30. Unfortunately, I was supposed to already have had twice in the past month or so but it was first postponed because of insurance not clear on psych evaluation procedures. Then I was supposed to have it this past Thursday but the center had a surprise Medicare audit that day and they didn't feel they would be able to give me the appropriate time and attention. They could not have been more apologetic or sympathetic so although it was emotionally stressful because both times were cancelled at the last minute they have gone above and beyond to try and make it up to me. So, I will be having my 7-day Medtronic trial on Friday, November 30th (they reassured me it will definitely happen) for RSD pain in my right ankle. I have been told I will be sedated and the doctor has explained what he will do. Reading the comments I hadn't thought of getting a grabber to help with unexpected items but will definitely check that out. I've now how two trial runs for prepping and I come up with more things to do each time to help. Wishing you great success with your trial, Colleen!
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Unread 11-19-2012, 06:37 PM   #32
SnowWhyte
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Smile LagunaErica-

Welcome LagunaErica!

Thank you for the well-wishes! Best of luck to you in your trial as well!

I'm also getting a Medtronic unit for my trial, and if that goes well, I will be getting a Medtronic Adaptive Stim RestoreSensor SCS implant. Once programmed correctly, I'm told it's great..."Set it, and forget it" is what I keep hearing, which sounds like a great lil concept.

I'm also getting it for RSD pain... in my L foot that has spread up my left leg and over to my right leg, and also back pain do to bulging disc L4-L5. So I understand the devil that is RSD, as do most people here (as you've probably found, this is a subforum from an RSD/CRPS forum).

Anyway, again, good luck to you in your upcoming trial. I (and I'm sure many others here in our loving community of fellow SCS'rs) will keep you in my prayers.

~Colleen
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Unread 11-20-2012, 08:51 PM   #33
Rrae
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Smile Hello LagunaErica!

Welcome Aboard!

So glad they finally landed you a date for your trial!
You'll get lots of caring feedback here and we'll be anxious to hear how this goes for you, so please keep us posted!

It's great to have you!

Rae
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Unread 11-02-2013, 07:16 PM   #34
RAGCPA
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Default Chronic Pancreatitis and decisions

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



Quote:
Originally Posted by Sandy Kay View Post
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
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Unread 11-02-2013, 07:57 PM   #35
Rrae
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Smile Hi 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


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Unread 11-03-2013, 01:38 AM   #36
RAGCPA
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Default

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
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