Hello All--

I'm new to the site (as a "member" anyway...have been a regular visitor), and I was wondering if anyone here has any experience (either personally or via family or friends) with SCS for Chronic Pancreatitis (CP)??

I have suffered from CP for nearly 14 years now. Initially upon diagnosis, I opted to "suck up the pain" and not accept any aggressive treatment (other than pancreatic enzymes) secondary to my career (Paramedic). I obviously couldn't be taking narcotics and be responsible for people's lives.

However...as anyone with CP can attest, "it only gets worse with time". So, in October of 2011 I had the ABSOLUTE NEED to start pain meds. Initially, they were a blessing (in that they helped my pain tremendously--bringing my pain score from a 7 or 8, downtown a 2 or 3). Unfortunately however, pain meds come with a TON of unwanted side effects.

About a 2 years ago, I was referred to a big city University Hospital, and started receiving "Celiac-Plexus Blocks" (essentially, this is a procedure where a highly trained GI Surgeon performs an injection into the celiac-plexus--which is the nerve center for many GI organs; it is done via endoscopy and endoscopic ultrasound). Initially, my response to these blocks were INCREDIBLE--complete pain relief!! Unfortunately, for me the blocks only lasted 6-8 weeks at a time (each individual patient can have a different response as far as how much pain the block(s) relieve, and how long they last). Now, VERY luckily for me, my GI Surgeon agreed to do these blocks as often as I would need them; BUT, as often times can happen...after a period of time the blocks can become less effective (ie., they may not work as long or as well). I had a period of time where the blocks no longer relived ALL of my pain (as they had initially), and then my most recent block did not work at all.

So...now my doctors have asked me to look into a SCS for my Chronic Pancreatitis. After doing a TON of research tonight online (via many medical professional websites / journals, ect that I have access to, secondary to my medical training) I see that there have been SOME patients whom have received a SCS for CP, however honestly there is NOT a lot of information out there.

Here is where YOU (my new friends here at NeuroTalk) come into play...is there ANYBODY out there who has had a SCS implants for CP? And if so...how was/is your success/response been??

Thanks for listening...and I hope to hear from some of my new NeuroTalk friends soon!


God bless,
--PancreatitisBUBBA

dear BUBBA,
i opt not to have any surgeries
2 failed cervical fusions 3-11-10/4-15-11
5/6-6/7 plate and cage
double mastectomy found my cancer
someone will chime in with suggestions
just a welcome is my intent will follow
your story

someone who cares

Welcome!

It's great to have you here in our little corner of the universe. I'm sorry that you've been suffering all these years with your pancreas. I know the very person who can probably give you the best input right offhand! Our very own Sandy Kay! Surely she'll see this and respond .

Here's one of her posts that popped up when I did a forum search on 'pancreas'.....
http://neurotalk.psychcentral.com/post929702-9.html

I know what you mean about there not being a whole lot of info regarding SCS and internal organs, but there are those who have gone this route.....several have passed thru over the last few years.

I hope you find NT helpful. The people here are absolutely great. Friends are on the way!

Caring,
Rae

Hi Bubba
You and I seem to share similar problems dealing with the pancreas. In 2006 I started having severe epigastric abdominal pain. After gall bladder removal, exploratory surgeries, 5 ERCP procedures to open the sphincter was diagnosed with sphncter of oddi dysfunction.Many times after ERCP I developed pancreatitis which led to hospitalization.
I worked with a few different pain management doctors and ended up using many different pain medications. After years of pain my Dr. suggested Scs. My pain is intermittent so my trial was iffy. It wasn't a bad wk but I felt there was some improvement and was willing to move ahead. The actual implant proved to be challenging to get coverage in my epigastric area. Both the rep and doctors took a long time to make sure I got coverage where needed.
The one rep who was there for implant has been the most helpful when tweeking my settings.
I am coming up on 2 years from implant. I still have periods of level 8/9 pain but with the stimulator it brings it down to about a 4/5. along with use of some pain meds, but I am no where near the Med level two years ago the stim is on 24/7.
Good luck
Sandy Kay

I feel sad to learn of the great difficulty with which you are enduring life, yet GLAD you are reaching out to us and experiencing Sandy Kay's real life response! I pray you find the answers, and perhaps through a trial consideration the means to evaluate "up close and personally" whether this scs wonder may be of beneficial use to you.

The way cool thing about this place is folks are so very willing to share thougts and experiences, then come alongside and provide support as you so very much need it.

Know I will be praying for you my friend,
Yup,