inplantable pain pump-multiple questions for those of you who are experts in this fie

[satchelle]

Hello Friends,
I sure could use some of your wonderful expertise whether it be from personal experience, a loved one with experience or horror stories if there are any. This is being presented to me as a last alternative prior to looking at the disability option for my chronic pain control. I have read all the info the docs have provided as well as watching the DVD on the subject that the doc provided. I have asked my docs if they have any patients who would be willing to talk to me and answer my questions and they have been very forecoming with all my answers, however, I have heard not one single bad thing that might or have actually happened. Bascially, I want ALL viewpoints, not just the handpicked cases the docs have choosen for me to hear from. I have lost my job due to the inibility to work steadily and I'm grasping at straws at this point.

I have been told there is a trial period which depending who I talked to or the internet info I read sounds like 3 or 4 different ways to approach this. Also, my chronic pain stems mostly in the abdominal area which is caused by chronic pancreatitis due to pancreatic duct stenosis. I have had all the surgeries with regards to my pancreasis regarding duct dilitation, stent placement, removal of part of my pancreasis etc......

I have been told that the trial portion could be anywhere from a day patient or office visit type thing to a 2-3 day inpatient stay. Even though I lost my job I still have insurance converage and would like more info to see if this is something to persue while I still have insurance coverage. For the actual placement, how long would that require being in the hospital?
So please, any info you can give I would vey much appreciate. I have so many questions but I thought I would wait to see what kinds of things you went thru before I start asking my questions. PLEASE PLEASE I want to know the worst of it as well as the best....did it have a dramatic difference in your life Thank you for any info you would be willing to share

Thanks so much


Satch

[lobelsteve]

Hold on cowboy,

What have you done prior to arriving at the pump option?

1. Long acting opioids?
2. Adjunctive neuropathic pain meds?
3. Celiac plexus block under fluoroscpoic or CT guidance?
4. Celiac neurotomy under CT guidance.
5. Visceratomal spinal cord stimulator placement (needs tertiary facility and not just any pain doc due to scarcity of data and paucity of patients who have had this and even fewer with successful visceratomal pain stimulation paresthesia).

Welcome to the board.

[Maggie]

Since you stated that this would be a last consideration for pain control, I assume your doctor has tried all of those other options appropriate for your condition. I had thepump for five years and when the battery ran low I did a trial without it and didn't have a new one put in. Reasons for that are varied, but, I will give my experience.

Afer having numerous ESI's, blocks, and any other kind of injection, as well as, short term and long term opioids, my doctor suggested the pump. I had severe side effects from the oral meds. I fell asleep at the wheel, while performing on a musical instrument, and other embarrassing places while taking the meds.

My trial was in hospital for two days. (This was 7 years ago and I was one of their first). I did fairly well, but, when they bumped my dosage up to 5 mgs. per day of morphine I started sleeping even worse. Then I was given an increase of bupivicaine which helped reduce morphine, but, still no better. I took provigil for the sleepiness. Insurance quit paying for it and they wanted $600.00 a month, I had to stop it.

As far as pain goes, it was a big relief for my lumbar pain as that is where my failed surgeries were. However, I got no relief for my cervical muscle pains and migraines. The only PM doctor within 100 miles did not believe in breakthrough meds so I spent 5 years of pain for them.

The reason I am going into detail is so that you will understand the difference in people's situation. Your refills will have to be covered by insurance and they can be as much as $1,600.00.
I am going to post this before it is erased and will add more later if I think of something.

[BrokenBladder]

Bumping this up hoping for more answers for her!!

[satchelle]

Whoa the horses.......sorry that. I was at one of my "grasping for straws" episodes all the while trying to keep from crying so much that I didn't short out the computer. Today I am much calmer and more rational so please forgive my fragmented and disjointed thought processes.

1. Long acting opiods-been on those since 2001 have come across a pretty good combo for me, however the insurance company will no longer cover the Actiq since I don't have cancer. My main problem is that with the chronic pancreatitis, I vomit several times a day which anything in a pill form just ends up getting puked up. I also use the fentanyl patch which works very well and I have stayed on stable doses of everything for years. The one prob with the patch is when I need a short acting form of pain relief, the patch just takes hours to kick in. Yes I also take many different types of antiemetics to combat the vomiting. Yes I have a special diet of easy to digest foods to ward off the vomiting as well. For the past 5 years I've done fine with the combo of meds, the kink is now the insurance won't pay for the meds that will keep me out of the hospital.

2. Adjunctive neuropathic pain meds- I'm not sure what these are? Are these the meds that are given for those folks whose pain issues are primarily nerve related such as peripheral neuropathy type stuff? My pain is all abdominal (visceral) the pain is caused by the stenosis in the pancreatic duct so when my pancreatic enzymes try to flow out the duct, they get backed up into the pancreas causing pain and inflammation along with pseudocysts which are fluid filled areas in the pancreas. The way it is explained to me is like my pancreatic duct is constipated and the pain and pressure is caused by the stuff unable to get out (sorry this is a gross way to put it).

3. Celiac Plexis Block- I have had 2 of these. one was in 2002 which resulted in a small bowel obstruction approx 10 days after the procedure and Which lead to a small bowel resection. The docs didn't think this had anything to do with it so they tried another celiac plexis block in 2003. Five days after this on, I develpoed an intusseption on the small intestine.(this is where the bowel telescopes into itself until it blocks itself up. This resulted in another obstruction and bowel resection. At this point they are hesitant to do any other type block for fear that somehow these are cutting off the nerve feelings which are responsible for the peristalysis of the small intestine.

4. Celiac neurotomy under CT guidance. What is this? This is something I have never heard of. Does it involve sorta the same things that the celiac block does? This has not been suggested to me yet and I would appreciate more info.

5. Spinal cord stimulator-this has been suggested to be and I was told due to the complexity of what I had it most likely would not provide any benefit.

6. These are other things I've had done in hopes to relieve some of the pain.
Stent placement x2 into the pancreatic duct where the areas of the duct
are narrowed hoping to relieve the pressure caused on the pancreas.

Finally they removed part of the pancreatic duct that was narrowed and now have my pancreas draining directly into the small intestine. This worked for about a year until I began having all the bowel obstruction in that same area.

7. My last option which is one I an vehemently against is to have my entire pancreas removed. This of course would take away 100% of the pain, but it would leave me a fragile diabetic and since I am the mother of young children I just could'nt do this option.


So now my options are to do a trail for the pain pump. Fight the appeal system to get the meds that I know that work, or ?????????

Or disability---since I just lost my job 3 days agao because I was too sick and in the hospital two many times for them to keep me on.



Sorry if I got ahead of myself. It seems I have a million things mixing all around in my head at the moment and keeping them straight is a struggle

Thanks to all of you for your support, prays, ideas, well wishes etc. You guys and gals are really the only ones that I can talk to who truely TRUELY know what I am feeling and what I am going thru.

Thanks for being there, it means more than I can express

Love Satch