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Pain Pump QUESTION

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Posted 11/11/2008 10:21 AM (GMT 0)
Susie (or anyone else who knows...), I picked up my medical records from the hospital; I am still in limbo as to what I'm going to do re: the pump, but as I said - I'm not making any decisions until after the 1st.  But I'm trying to figure out how much medicine I was receiving during my trial...  This is what my records say: "The patient was started on intrathecal opiate infusion trial of hydromorphone at 0.1mg/mL at 0.2 mL/hour.  The patient's oral meds were cut by half at the beginning of the infusion.  Gradually the patient's intrathecal infusion was increased every 4 hours.  ...she was noted to have adequate pain relief on the intrathecal infusion medication in addition to 50% of her oral meds.  The maximum infusion rate was 0.9 mL/hour of 0.1mg/mL of hydromorphone". I can't figure out exactly how much medication I was receiving... I am embarrassed to say that :)  I'm also wondering how this amount compares to what others have in their pump, do you know?  So, I was getting that amount of intrathecal meds  plus about (the equivalent of) 300mg of oral morphine (50% of my oral dose).  Which makes me assume that when I get the pump implanted, my intrathecal dose will be higher once I make the transition off the oral meds.  If anyone can help, I'd appreciate it!! --Tina
Posted 11/11/2008 5:32 PM (GMT 0)
Tina,
Are you still trying to get on Pumpsters.Com? I believe Susie said that she
thought you had to have a pump to get in there but you could try.
Somebody gave us two other addresses. Unfortunately, I don't remember
who posted this information.
Can you imagine what it would be like to live pain free? Can you imagine what
it would feel like to make your heart doctor pleased?
Each person who gets a pump is different. Different health problems. Different
circumstances.
I hope you have a low pain day today.
Pamela
PS I got up at 4:30 am. I was painfree. I've been painting a birthday card for
my grandaughter. I'm really excited about it. Well, I sat there at my painting
table and took my little brush to make cat hairs, etc. As I was painting, I'd
fall asleep and jerk. I did this about 4 times. I'll have to start the card over.
It's about a 4 hours ordeal. (Laurel Burch cats) Arghhh. rolleyes
Posted 11/11/2008 9:53 PM (GMT 0)
I found an interesting statistic - a study followed 454 patients who received the intrathecal pain pump.  Out of those, 14 (which equates to 3%) got meningitis following insertion of the cathetar.  I guess there's just really no way of knowing if it will happen again.  There's enough places that list meningitis as a possible complication that I know it wasn't just a "fluke".  I will probably have the implantation - but if I get meningitis again, that will be my last try.  --Tina
Posted 11/11/2008 10:01 PM (GMT 0)
Pamela, I tried to get on yahoo groups/pumpsters.  I haven't heard anything back.  But if it involves a "background check" - that's ridiculous.  I don't have anything to hide, but that's too much.  I just appreciate people on this board that have the pump and are willing to help others that are thinking about it, etc.  If I get the pump, I'd want to help others that are considering it. I can't remember what it feels like to be pain-free.  I don't even have that as a goal anymore; I just want to have pain reduction.  To go through a day without thinking about my situation more than a time or two...  Is this an unreasonable expectations  I don't think so....    More later.  --Tina
Posted 11/12/2008 7:25 AM (GMT 0)
A background check! That sounds peculiar. Very. Pumpsters. Not for me.

That 3% statistic thing is interesting. My husband had a surgical procedure
a month and a half ago ~ not serious. Anyway, he got a REALLY serious
infection during the procedure. I had read that there was a "slight" possibility
of this happening.

Yes, Tina ... I understand just wanting to not have pain on MY mind ALL the
time. I just want it to lift. Still, I think you are in a better place to have
it work. You have age on your side. Surgery is rough on grandmas.

Pamela
Posted 11/12/2008 1:07 PM (GMT 0)

momto6boys, listen I am also interested in the "pump" I have seen a Rheumy one time, and he prescribed 6 months of vicadin, and referred me to a pain management Dr. I am still trying to get an appointement with her. My question to you is, how do I go about asking for the pain pump? I feel ashamed to ask her, like she might think I am just wanting to get "high". I would give anything not to have pain, just like everyone else here feels too. Thanks for any input on the pump.

 Hugs yeah Patty

Posted 11/12/2008 1:48 PM (GMT 0)

Hi Tina,

I wish I could give you a good explanation on the doseage thing, the only thing I can tell you is the amt you were receiving via the trial was much less than your daily orals. This was one of the things my dr explained to me was being able to have a tolerable amt of pain but have it mamaged by a much lower dose. There is alot of difference between oral meds and pump meds. We do receive higher amt of meds due to the concentration level in the pump. It works by delivering the drug directly to the source of the pain, well crap you know that, but by being delivered that route you do use less meds overall on a daily basis. You wwere receiving a very small amt od I think Morphone and was able to reduce your orals by 50% which still had you on less morphine overall.

I have seen the syringe that comes from the pharmacy that has my new meds in it and its a large syringe that you see in drs offices. It not filled all the way to the top either. Let me get my recent pump reading out. This is the meds & amts that are in a new syringe;  Dilaudid 25mg/ml for a total of 300mg, Clonidine 150mcg/ml total 3000 mcg, Sufentanyl 26 mcg/ml total 500mg, & Bupivacaine 15mg/ml total 300mg. Now check this out my dose an hour 0.167 mg per hour and per day 4.000 mg thats for a 24 hr period. This considered a low dose. My pump is a 90 day pump too. I am on less meds than what I took orally. The meds are actually stronger in the pump, therefore less is needed.

Yes, I was quite floored my the Pumpsters when I was told they were checking me out. Never heard of such in my life,lol. If I can help you Tina please let me know. Hugs Susie                            

Posted 11/13/2008 8:01 AM (GMT 0)
Moondancer (Patty) - Re: the pain pump, do you have a scheduled appointment w/ a PM doctor?  That's where you want to start; with that being said, not all PM docs do the pain pump implantation.  But they should at least know about the pump...but some are biased one way or the other.  Have you been on other pain meds than Vicodin?  Any long-lasting stuff?  I don't see any listed under your med list; you definitely have lots of pain issues though that I think (just my opinion) could really benefit from a long-lasting medication.  These kind of meds would include morphine sulfate (MS Contin, Avinza, Kadian); oxycontin; duragesic patches (Fentanyl); methadone; etc.  From my research and personal experiences, the pain pump is recommended to those that have exhausted all other avenues (meds as well other therapies - injections, nerve blocks, surgeries, physical therapy, etc).  I've been on every pain med there is, have a scary-high tolerance to meds (meaning, most docs look at my dosages of pain meds, and can't believe I'm breathing), etc.  So, the pain pump is coming at the end of a LONG five year road of trying every possible option.  Let me know what you've been on and such.  I really think it's great that you are going to see a PM doctor; have you ever seen one before?  I'm hoping that you get a compassionate doctor that knows their stuff.  It makes such a difference.  Talk to him/her about everything....that you are tired of living in such pain each day, that you want a better quality of life, etc.  Please do NOT feel ashamed to tell your doctor how you feel or even ask for treatments that you've heard of.  You are hiring a doctor to be your advocate and to help you.  Please know that you have every right to ask, actually demand, better pain control for yourself.  Feel free to ask anything else, Patty.  I wish you the very best of luck - especially w/ getting a good PM doc.  --Tina
Posted 11/13/2008 8:35 PM (GMT 0)
Patty,
The pain medicine goes straight to your spine. (I think) I think it would
be impossible to get high on a pain pump. (Not that I get high on anything ...
but ice cream & Coffee)
Like Tina, I think that many meds and alternate methods of getting the
pain in control must be tried before a pain pump is recommended. There
are a lot of pros and cons to the pump.
If you think you want one, ask the new doctor! She might be happy to answer
your question.
Pamela
Posted 11/13/2008 9:07 PM (GMT 0)
MoonDancer,
Did the Rheumy prescribe the right medication for you?
Maybe he/she didn't prescribe correctly. Maybe not enough?
Just something to think about.
Vicodin is a starting opiod in my area. (CA)
Pamela

PS ... I see that Tina just said about the same thing. smilewinkgrin
Just had to get my two bits in.
Posted 11/13/2008 11:06 PM (GMT 0)
you know i have to say i was dead set against a pain pump but after reading that "pain free" post i literally sat straight up. i can't believe it! say its true!!!! i had talked to gramps on here before about it & he had so many troubles with it.... i thought. no no thats not for me. i even saw a little old lady screaming at the top of her lungs about withdrawals at my last dr apt. how can that possibly happen? i thought it was automatically dispensed? but, i'm excited about all this new info. i'd like to hear some more facts about all this. thanks -shannon
Posted 11/13/2008 11:57 PM (GMT 0)
ok, skip the last question.... isn't the internet wonderful? i found some great info about pain pumps @ this website..... hope this helps anyone else:

http://www.mayfieldclinic.com/PE-PUMP.htm
Posted 11/14/2008 1:40 AM (GMT 0)
Thanks kttn...
I will check that later. Can't wait.
Right now I'm rushing out to buy a GOOD pillow.
Can't wait. : )
One thing I worry about:
If a clinic is advocating for a pump, they may put on only the good news.
Pamela
Posted 11/14/2008 4:43 AM (GMT 0)
they describe the procedure, everything. a lot of good info. i think i am going to talk to my dr about dilaudid first. i have a few major sugeries under my belt & i wonder that its the reason i have such a high tolernce to pain meds. but i liked the info i read, sounds like it might be rough for awhile- but if i understood things correctly- there is actually less medication going in your body. i like that idea. i also read about a procedure they do here (and i would assume everywhere else as well) called manipulation under anesthesia. they claim that while under anesthesia (they seem to be chiropractors, but i don't think a chiropractor can use anesthesia) anyhow they put you asleep and manipulate (crack & twist & massage) the scar tissue. claims to help with bulging discs & fibromyalgia. i hate having fibromyalgia- its bad enough to have my upper & lower back pain but for extra giggles lets add something thats really not understood that well...- (done ranting) but it was interesting. i saw a site that actually had a video. it was interesting- freaky how they pop & i mean they REALLY twist your body. its been on the local news so it must be legit. i think the site is something like muaoftampa.com? you can probably just google it. i am going to talk to my dr & see if they can do it next time i am under. or at least what they think of it. well i hope you found a lovely new pillow! i always look at the ones at sleep number & keep saying i am going to buy some. i know its important with back issues. what kind did you get? ----sweet dreams---- shannon
Posted 2/18/2010 1:24 PM (GMT 0)
Hello,

I am new to this site, but I only see posts from 2008? Are there any people that have recently had the pain pump trial done? I just had the trial pump put in yesterday, I am still experiencing pain from the procedure so I am not sure if I have any relief from my back pain. I had a spinal fusion in 2005, I was recently diagnosed with spinal stenosis? Doc said my spinal column was getting smaller and squeezing my spinal cord. I have evry bad pain in my lower back and hips and left leg. I do have permanent nerve damage to my syatic nerve going down my left leg (always numb down to my toes. Anyway, does anyone have a similiar situation?

Posted 2/18/2010 5:25 PM (GMT 0)
Hi Pell and welcome aboard. I do suggest that you start a new thread & introduce yourself so the rest of the members can see your post and give you a proper hello. I am afraid by posting here very few will see your post. To start a new post go to the top & on the left it says "New Topic" click that & in the space you can write something like" hi I am a new member", then it will drop down where you can write a little about yourself.

There is a search button at the top right put in "pain pumps" and you should be able to pull up lots of info on pumps. There are a few of us here that have pumps. I have had mine since 05. If you need anymore help please let us know.
Posted 2/19/2010 12:04 AM (GMT 0)
Hey there.  New to this chat room, but your question is right up my alley.  I've had the pump for about two years and honestly, I have become less ambulatory and more in pain than without it.  So my genius neuros say the "...the combination of the pump med (dilaudid) and others (orlas and antibodies) must've been wrong...we need to REMOVE the pump"  Easier said than done.  I am now going through the process of being weaned OFF the pump, going in every Tuesda and having med TAKEN OUIT of the system.  A new experience in pain every week.  In eiht weeks when it s empty, it will be surgically removed.

In another stroke of pure sadism, the Doc(s) decided to not increase my oral meds while the weaning off the internal med was happening.  This will last about another few days, because I will either attack the Docs office with a full frontal assult of ant=personnel weaponry and distracyion fire bombs, or I will gently, though gladly hobble to the top of the Golden Gate Bridge and swan dive into oblivion. 

o. pump sclump.  Don't get me started.

Posted 2/20/2010 8:10 PM (GMT 0)
Please read the forum rules before posting. This site isn't a place to advertise other url's. Thanks.

Post Edited By Moderator (Chutz) : 2/23/2010 10:41:50 PM (GMT-7)

Posted 2/20/2010 8:36 PM (GMT 0)
PainFreak is your dr wanting to remove the pump just because your current medication does not work? Has any other meds been tried in your pump? There are many different combos that can be used if the dr know anything about compounds. If he doesn't then you are sunk. I am so sorry this is happening to you. What is the doage of Dilaudid being used in your pump? Please write more if you feel up to it.
Posted 2/21/2010 12:14 AM (GMT 0)
Hey KTTN: When do you find time to type!?

(Please use respectful language and read the forum rules before posting again)

Post Edited By Moderator (Chutz) : 2/23/2010 10:40:01 PM (GMT-7)

Posted 2/21/2010 3:32 AM (GMT 0)
KTTN: Of course, I jest. But there's nothing really that funny about our conditions, is there? I apologize if I offended. Hopefully, we have a resiover of laugh left in us when all we feel like dpoing is cry. Have to, or we're dead in the water.
Posted 3/3/2010 10:16 PM (GMT 0)
First stop comparing the amount you have taken orally, with the amount you'll get through your spinal column.  The facts and fiures are totally different - the only thing that matters is if it helps.  When you had your test, did it help?  Did you feel better?

When I had mine, I was crying it felt so good.  That lasted about 4 hours, but wow was it 4 hours I wish I could have all over again.  That was 6 plus years ago, and yes I did get a pump installed.  Afer 5, the battery died and so last year I got a new one installed.  When I went without my pump for around 3 months (because I was going through an above the knee ampuation at the time, so they thought I was to high a risk to keep opening me up), I thought I was going to die, but then they turned me back on and my life found it's new normal again.

Don't think a pump will take away your pain, because it won't.  It will even out your pain levels though.  It's not designed as a complete replacement for oral medications, though on occassion I've heard people say they don't need them, I am actually taking 160 mg of OxyContin and OxyIR for breakthrough pain even though I've got my pump going full blast.  Consider it instead, a new way of getting dope in your body so you don't go quite as crazy quite as often.

I'm sold on them, but beware, they are not small and depending on where it's placed, it can be a bear to live with at times.  Go for it if the doc thinks it's the way to go.  Beware though, you'll have quite a lump on your spine that will take months to subside, and that lump will always be there.  When your back hurts, don't be surprised if it's at the location where the whole mess is sewn in place.  Good luck.  Bob.

Posted 9/18/2012 7:59 PM (GMT 0)
I am sick of these pompous little orthopods annd neurosurgeons who cop an attitude when I come in to get advice on what to do.

Anyway,I am a control freak and am fighting the pump because of it.I have 24/7 pain as all of you do many spine ops.Any surveys around about success rates?I have a buddy in California 10 spine ops the pump alot of problems but now he is having preault in there now.

Hi... I had to edit some of your post because of forum rules - please read them, thanks... plus this is a really old post of mine from 3 years ago. Feel free to start a new threat about pumps. Thanks. --Tina

Post Edited By Moderator (Momto8kids) : 9/18/2012 2:10:45 PM (GMT-6)

Posted 9/18/2012 8:08 PM (GMT 0)
Good heavens, that's an old post of mine, lol. I'm locking this thread....
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