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.
Originally Posted by Sandy Kay
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.