why dont more of pancreatitis patients get pain pumps?

[Guest guest]

HIya

I was just wondering why people dont go down the pain pump path? Is it

the cost in the US?Or does insurance not pay for it?

I would think it would help most of us in pain that or the spinal cord

stimulator?

I am investigating this as an option.

cheers

debs

New Zealand

[Guest guest]

Hey everyone,

About the Pain Pump I was to get the Pain pump installed with the Fentanyl

medication but when I asked my PCP and my GI Doc they were not to thrilled

about it and said that I should stay on the Plan I am on now which is the

Duragesic 125 mcg every 48 hrs an then the Actiq 400 mcg every 4 hours or PRN

and I

am also on all the GI med's and the enzymes I take like about 18 enzymes with

each meal. They said that it is more of a last resort and if I go on that

now then what will I take when It gets really really bad so I understand what

they mean because I don't want to be all doped up and not be able to do

anything and be on the couch and out of pain but be out of it. Plus my wife

said

the same thing and she is scared as well and also with the infection rate and

all but it is really ok and it is rare for the infection only if the MD screws

up and that is pretty often now a days. I have had this Disease for about 8

or 9 years now and I am only 29 and there is a lot more to go so I don't want

to screw it up now I will wait until it is a last resort. Well that is just

me.

I have another question for anyone, Please if you can help PLEASE DO,

For the past like week or so I have a metal taste in my mouth, I have a

metallic taste in my mouth and I cant get rid of it for anything. I have tried

everything from Brushing my teeth a thousand times to Juices to foods to mints

to halls to everything and nothing. Every time I eat or drink something I

taste Metal and it wont go away, I was wondering if anyone else has had this

problem or knows someone that has had it and what is it and how does it go

away.

Because I think it will only get worse because I am really dizzy light headed

and I am really pale now and of course the pain that goes with it. So if

anyone can help me please I need help with this. But please E mail me direct to

_Shadoww576@..._ (mailto:Shadoww576@...) because I need to get this

taken care of. I mean I thought it would go away and I would be ok but it

hasn't so if anyone can help me or has a suggestion or anything please E mail

me because I am sick of this and it makes me sick to my stomach and I can eat

anything ,, Thank you for your time and help.

Gio

[Guest guest]

Good morning group. I have been a member for awhile, a short while

now, an I read with interest all the posts that come in my email

digest, but choose to keep to myself most of the time. Not that I

don't like the company, but MY company most times is rather dark and

stoic, so.. I read...

I hope though that today, I might have information to offer that some

may find useful. Let me try.

I recieved my 1st medtronic implanted pain pump... Intrathecal drip

medication device, in December of 1995. At that time, I was diagnosed

only with Chronic Severe Intractable Abdominal and Lower Back Pain;

I'd been suffering miserably for over a year, and due to my lifestyle

and lack of insurance coverage, I was not recieving very good health

care and a diagnosis of Pancreatic problems came only a few months

AFTER the implant, so- I cannot speak directly to what the protocals

might be in relation to " Pancreas and Pumps specificaly " . I hope that

made sense.

Fortunately (?) it just came to the point where I was dumped by the

docs that felt I was just a nutcase, they were at the ends of their

respective ropes with me, and I was lucky enough to find a doctor

that DID ACTUALLY believe I was in severe pain and distress... It was

in hindsight that they now believe the pain problems were all related

to my Panc.

Anyhow, I was a morphine drip patient for the first pump, and for 4

years of the second pump, went from 3 mg Q 24 hours intrathecaly up

to 34 mg in those 8 1/2 years. I was swapped over to Hydromorph,

Diladud about 6 months back, and we drip at 20.076 mg every day now.

I'm afraid I'm about due for a third pump here within the year, as

even the best scenario see's the batterys depleted after about a 5

year run. Second pump went in in April of 2000.

Yes, the pumps are completely implanted, the Surgeon makes a pocket

in the abdominal area, not deep through the muscles, just under the

skin, and they thread a catheter under the skin along the side to the

back, anchored in very well, and the shunt (?) is placed into the

interthecal cavity and from there it drips.

I have never had a problem with any diconnects, never had a problem

with infection.

A test for eficacy was preformed prior to approval, when the Dr. gave

me an interthecal injection of morphine , I believe it was about 1

1/2 mg or Morphine back in 95, and that gave me tremendous relief for

about 12 hours.

EVERYTHING had to be tried PRIOR to even being approved for the

challenge. Tens, Acupuncture, Biofeedback, Oral meds, Counseling,

Massage, Everything.

The first surgery gave me tremendous distress so far as a spinal

headache, and I needed a blood patch to the spine in order to keep

the spinal fluid from draining out... OUCH! That toaly sucked, way

worse pain that any Panc attack I had ever experianced... Felt as if

I had broken every bone in my body, neck and skull the worst.

Moving on... I still ge excellent pain relief from this mode of

therapy. But- I do still have breakthru pain to deal with. And after

having been on interthecal delivery for so long, trust me when I say

that it takes a whopping load of meds to even begin to make me

comfortable.

I am THRICE BLESSED to have made the aquaintance of 2 wonderful

Physicians, they both trust me implicitly, I have never given any

doctor reason to doubt me since the first referral to a pain doc back

in 95.I rarely ask for oral supplements, or anything narcotic, or

tranq. related, I trust them to make me comfortable when my CP

exacerbates to full blown Acute eppisodes... These days when I

explode into nausea and vomits and the body shattering pain that an

acute attack brings on, I call my PCP and he arranges with the Home

Care IV Nurses to escalate the pump by an increment of 25%, for

usually 5-7 days, thats about how long my acute epi's last, and then

we just crank it back down after that. I still get about a 10% bump

every 60-90 days as my body becomes tolerant to the rate.

My diet is full on liquid these days, I had a pic and TPN back from

August of '04 til December of '04, and then we started me on Boost...

Most of the time I do ok with that, conjunctively with IV Anzimet and

IV Pneregan alternated, by portocath... About 1 1/2 mg of ANZIMET

when needed... 'bout every 10-12 hours, and 25-50 mg of Phenergan

PRN... bout every 8-12 hours. Thats been routine now since... o...

hmmmm... Oh, April I guess.

Does the pump work... Absolutely. Would I do it again? Absolutely. I

believe it saved my life. I was totaly on the verge of suicide back

in 94, and doubted that I would ever be even close to pain free back

then.

My days still rate about a 2-3 everyday on the ol pain scale, but

that's so much beter than a screaming 15-20, right on!

Good Doctors, A whoppin load of trust on both sides of the fence, and

the foreknowlegde that IF you need Emergency Treatment, you WILL

still have a problem at times with the staff slighting you as being

an addict. That's where the close cooperation of the PCP and the Pain

Control Doc comes in... Once you have a pump, believe me, you BELONG

to them... Done deal.

I'm staring to ramble, I hope this might have been of help to someone

out there.

Bless all of you for the company and the understanding forumn which

you provide... Hey Mark.. S'up pal.

I'll be resting now... So-- 10 10 and back on the side!

gypsy

[Guest guest]

Hi Gypsy

Thanks for your feedback thats awesome, Its great to know that it has

been so positive for you.

I was really intersted int he acute attacks and how they handle those

by increasing the dose.

I absolutley understand and have gone through the thoughts of suicide

due to the pain.

Great

Which pump do you have? is it a medtronics?

cheers

debs

New Zealand