My sister needs help with her pump.Please help

[Inseek]

Hi.My sister is a T-12 , incomplete and shes had her pump now for about a year.She's in so much pain that she wants to kill herself.She sees her doctor about once a month so he can "tweak" it for her but shes in pain for a total of 12 hours a day.(Not 12 hours straight,total.) I guess her doc. has it timmed to where she only gets a dose for a few hours a day then shes in the pit of hell again for a few hours when the pump "turns off"and then her pump kicks in again and then shes fine.She also takes elevail(sp) and nerotin.Is this normal? What can she tell her doc.? He belittles her and says that shes getting alot of medicine already and that she doesnt need anymore.We were in a car wreck when we were 13 (we are twins) in 1987. How much more hell can she take before she does kill herself?I'm so worried and scared.I can not live without her.Please help us.

[Inseek]

Please help.......please....please...please

[bcsimpsons]

I just sent you a private message!!!

[Obieone]

I think you'll get a better response here ......

You need to find a doc that specializes in sci pain management ..... regardless .... no doc worth his salt should be "belittling" your sister .... very unprofessional .... I wish your sister peace and a quick resolution to her pain issues! http://bestsmileys.com/stars/3.gif !!

Obieone

[dejerine]

Inseek

So sorry about your sister's pain.

I am thinking you might review Dr. Young's post here earlier about pumps. It doesn't really sound like the pump is plugged and I am not sure what is in the pump. We have a problem with no one being able to measure our pain. If they could, no doubt the whole process would be a lot easier.

[David Berg]

How much Neurontin is your sister taking? When used for neuro pain it's common to have to use higher doses if they can be tolerated.

Also, I'll presume she's taking a generic, can you find out from the pharmacy, or on the bottle, which generic she's using? Read this thread and you'll see not all generics are created equal.
http://sci.rutgers.edu/forum/showthread.php?t=95293&highlight=neurontin+generic
When generics first came out some people who switched said it was like they were suddenly put on a placebo, but some seem to work better than others.

Aside from that, if Neurontin isn't working then perhaps she could try switching to Lyrica instead.

[Inseek]

Thank you for responding. I was thinking that her doc. only has it (the pump) programed to work for a certain number of hours a day and she needs it to work all hours of the day.Can he program it to do so?

[Inseek]

Her pump has baclopen and morphine in it. When she wakes up she is going to call me to tell me how many mc's or mg's are in it.

[Eileen629]

Hi Inseek,
Any medication delivered by pump including morphine, can (and should) be delivered continuously. The pump should never need to be programmed to shut off, because as you already know, then the patient's pain/spasticity will start to escalate again, and you're back at square one, trying to get it under control. So, I would absolutely discuss this with her doctor...or better yet...find a new one. No one in chronic pain should be brushed off like she's been. Also, many patients on pump meds are also given meds in pill form for "breakthrough" pain. And, as someone already mentioned, there's a newer "version" of Neurontin, called Lyrica, which seems to have helped some people more. Please, please, see a pain management specialist/neurologist that can address these issues. No one should have to consider suicide for pain relief! Best of luck to you both!
With love and prayers, Eileen***

[Josh A]

ya he can program it to do ''technically'' anything. i have one, my doctor changes it when i have probs. fortunately this doc. is being w/ medicine but an a--hole otherwise. but obieone is right you dont have to use that doc. i'd find one soon. she can talk w/ us. alot of us are experiencing large amounts of neuro-pain, it might help. where do you live i'd help you find the right if you want....? wish u luck

[Inseek]

Thanks for everyones responces.I'm printing out everything that I can find about the pump and what you guys are going through with it and I'm going to show him it to him.From what I've researched so far is that you should NOT be in this much pain with this pump.She tells me that a typical visit with him is that he usually just gets done with surgery with someone,he rushes in,has small talk with her ,does what he needs to do and rushes out the door.She says that she is supposed to only have it refilled every 3 months but shes in there once or twice a month and she says that her pain is the same.She lives in Kankakee in Illinois.I will talk to her about her neurotin.She is supposed to be getting a computer soon.It's hard for her to do anything at all.She usually spends her days in bed.I feel so bad for her.I wish I could take all of your guys pain away.I really do.

[jody]

not just a pain doc, I called almost every doc on my keystone list before I found one who specializes in treating sci pain. first I asked if they had patients with spinal cord injury, than I asked if he knew what cauda equina pain is. I was a little lucky that day, because he heard the receptionist repeating my questions, and made the appointment with me himself. it turns out he is a physiatrist who works for magee. a rehab specializing in treating sci patients. He did not belittle me, or tell me I wasnt really feeling that much pain, or tell me just to live with it. He does not think im a drug seeker. I told him about this forum. about
Dr young, and he seems very interested in meeting him. I have a little hope this may work out for me. so, my 2 cents is that you should make a few calls for your sister. she should have a booklet from her medical insurance provider listing doctors she can see. tell the receptionist that you are looking for a pain specialist who treats spinal cord injury pain.

could you fill out your profile a little more? and maybe let your sister know about care/cure too? their may be someone on the forum who lives in your state, or city, and could recomend you to a pain doc who isnt a butt head.

[jody]

I wonder if the pump is disconnected from the catheter. has she had an ex ray to see if the pump and its tubes are working and connected? if the tiny hose has slipped and the meds are being released into her tissues, she would have probs like you mention, while the pump just goes chugging happily away doing no good at all, because the meds fall short of their intended target point.

[David Berg]

Thanks for everyones responces.I'm printing out everything that I can find about the pump and what you guys are going through with it and I'm going to show him it to him.From what I've researched so far is that you should NOT be in this much pain with this pump.She tells me that a typical visit with him is that he usually just gets done with surgery with someone,he rushes in,has small talk with her ,does what he needs to do and rushes out the door.She says that she is supposed to only have it refilled every 3 months but shes in there once or twice a month and she says that her pain is the same.She lives in Kankakee in Illinois.I will talk to her about her neurotin.She is supposed to be getting a computer soon.It's hard for her to do anything at all.She usually spends her days in bed.I feel so bad for her.I wish I could take all of your guys pain away.I really do.
Like I said before, when you speak to her again ask her what her daily dose of Neurontin is, how she tolerates it, and what the generic company is that makes it. That name should usually be on the bottom of the label in small print, or she can ask the pharmacy.

[Eileen629]

Hi Inseek,
If you go to the Rehab Institute of Chicago's website: www.ric.org (http://www.ric.org) they have a search engine for "Find Locations" and you could choose: Outpatient, Pain Management (or Spinal Cord Injury), and they will show you where they have places in IL. Good luck!
Eileen***

[Inseek]

She takes 5, 400mg's of neurotin a day.It says gabapentin.She threw the paper away that comes with the med. so she does not know who the company is.I'm on the phone with her now.She says that her doc. does not have it "turn off" at certain hours ,(she's yelling at me).......he has the dose lower at certain hours and then higher at certain hours.Of course when it's lower she's in allot of pain.ALLOT OF PAIN....She's telling me to write all of this down.This is what appears on her session data report: #1- ms 10.0 mg/ml .#2 -1,000.0mg ml 2 boclofen bisal rate "1" 0.192 mg/hr #2 19.2 boclofen mg/hr.....Start time dose ...04:00 h:m #1- 0.250 mgs morphine #2 -25.0mgs boclofen .....10:00 h:m #1 -0.500 mgs ,#2-25.0 mgs .....16:00 h:m #1- 1.201 mgs , #2 -120.1 mgs ......16:00 h:m #1 - 1.201 mgs , #2 -120.1 mgs , 22:00 h:m #1- 0.851 mgs , #2 -85.1 mgs DAILY DOSE :#1 7.190 MG/DAY -#2 719.0 MG/DAY RESEVIOR VOLUME 14.9ML

[sjean423]

The pump is programmable, to vary the dose during the day. The point of this is so that the amount of med can vary as needed. Theoretically, so that if her pain were worse just after getting up in the morning, and in the late afternoon, but fine in the evening, she would get more med first thing in the morning, and late in the afternoon, and less in the evening. The rest of the time she would be getting the basil rate. (Note ^^ I made these times up for example, doesn;t reflect the numbers you posted.)

Obviously (to us, her, and you, but not her doc) the basil rate is not enough, and she should be getting them medication more frequently. It is possible that she wouldn;t even need more. It is much harder to bring pain down, than to prevent it in the first place.

The possibility of the catheter being dislodged should be considered, but since I understand that at certain times of the day, her pain is controlled, it sounds like at those times, she is getting the appropriate amount of med, so it is unlikely there is a catheter issue, unless it is such that she is getting some of the medication, and only part of it is leaking out.

I am so sorry she is in so much pain. I agree that she needs to find another doctor, who is willing to help her. She is lucky that you are there for her. And, when she is in pain like that, please don;t take her yelling at you to heart.

[David Berg]

Inseek, 2000 mg of Neurontin is a relatively low dose, especially when used for neuropathic pain. The "traditional" max dose is 3600mg, but I've often seen that surpassed when a patient can tolerate a higher dose, depending on their individual needs. Gabapentin is the generic name, very few people still take the brand-name, but there's a big difference between some versions of the generic, as was discussed in that thread i linked earlier.

BTW, can she describe her pain symptoms? Is it burning, shooting pain, or what? You can read about some of the different manifestations of central pain on my website.
http://painonline.org/mnem.htm

[Wise Young]

She takes 5, 400mg's of neurotin a day.It says gabapentin.She threw the paper away that comes with the med. so she does not know who the company is.I'm on the phone with her now.She says that her doc. does not have it "turn off" at certain hours ,(she's yelling at me).......he has the dose lower at certain hours and then higher at certain hours.Of course when it's lower she's in allot of pain.ALLOT OF PAIN....She's telling me to write all of this down.This is what appears on her session data report: #1- ms 10.0 mg/ml .#2 -1,000.0mg ml 2 boclofen bisal rate "1" 0.192 mg/hr #2 19.2 boclofen mg/hr.....Start time dose ...04:00 h:m #1- 0.250 mgs morphine #2 -25.0mgs boclofen .....10:00 h:m #1 -0.500 mgs ,#2-25.0 mgs .....16:00 h:m #1- 1.201 mgs , #2 -120.1 mgs ......16:00 h:m #1 - 1.201 mgs , #2 -120.1 mgs , 22:00 h:m #1- 0.851 mgs , #2 -85.1 mgs DAILY DOSE :#1 7.190 MG/DAY -#2 719.0 MG/DAY RESEVIOR VOLUME 14.9ML

Inseek,

Let me try to summarize what you have described so far. Your sister has a T12 incomplete injury and neuropathic pain for which she is taking about about 2000 mg of gabapentin (Neurontin) per day, amitriptyline (Elavil), as well as intrathecal baclofen and morphine. The schedule is not clear the way that you have it typed. You do not mention any other medication that she is taking for "breakthrough pain". However, it appears the intrathecal morphine is being given intermittently upon a basal rate of baclofen.

Let me first say that this is already fairly aggressive therapy. It means that her doctor is taking her pain quite seriously. I am not sure of the doses and schedules of of morphine and baclofen delivery. But, clearly, your sister should be telling her doctor that the current doses are not enough. He could increase the intrathecal dose but, to avoid overdoses, most doctors prefer to provide some oral medication for "breakthrough" pain, when the basal amounts are not enough.

Regarding the other advice that people are giving, the gabapentin (Neurontin) dose of 2000 mg/day (5 times 400 mg) is not the highest that people get. Some people get as much as 3000 or 4000 mg/day. Is she at 2000 mg/day because she had side-effects from the pain? David Berg is asking whether she is getting the brandname or generic drug. Apparently, according to some people, the generic may not be effective as the brandname. Pfizer makes Neurontin or the brand name version. The fact that you use that name suggests that she is getting the Pfizer drug.

Are you sure that her doctor is aware of the pain that your sister is in? I find it strange that he is not treating her with higher doses unless your sister has had a side-effect (such as sleepiness) with higher doses. Something does not make sense.

Wise.

[Inseek]

When her pain hits shes telling me that it feel like it pulses every second of exschusiating (sp?)pain.It feels like it's burning in her leg it's a joilting ,stabbing ,burning pain with every pulse,every second, she has to squeeze something or she'll scream.She said that she could probably break a glass bottle and it goes on for hours.Sometimes she passes out because of the pain.8 hrs in the morning is the worst for her because she has a really low dose then , but when she goes to her doc. he'll just switch the hours around so she'll just be in the same pain , just different hours.She does not like taking the neurtin because she's a feels like a zombie on it and she feels she shouldnt need it because she has this pump.Whats the point of having this pump if she has to take mind numbing drugs? She can't even get out of bed because of the pain plus the drugs.

[Inseek]

She's telling me that the pain is exactly the same with or without the oral drugs.She says that it doesnt matter how much she takes either.I'm thinking that this has to do with how much medication,boclofen/morphiene is in it and how much is being disributed through out the day-night.I don't understand why he can not just get it right?Thanks for everyone addvice and help.It is really,really appreicaited.

[sjean423]

The neurontin is for nerve pain. That kind of pain doesn;t respond the same to the medication she is getting in the pump. Increasing the medication in the pump isn;t necessarily going to make a difference with nerve pain.

If the neurontin isn;t doing the trick for nerve pain, there is another drug Lyrica, that is used to treat nerve pain as well.

I am so sorry that she is hurting. Maybe she could keep a journal, with the time of day, and the type and amount of pain. I suspect you would have to help, as it sounds like a lot of time her pain wouldn;t allow her to even do this simple thing. In fact, that should be included in the journal. What the pain is preventing her from doing.

Then the next time she goes in, she would have something concrete to shoe her doctor, and perhaps he will understand her issue better.

[Eileen629]

http://forums.about.com/ab-backandneck/messages?msg=2492.1

[thehipcrip]

The idea of keeping a pain diary is an excellent one, sjean. It would clearly show how the times when she was in pain corresponded with the doses of pain med released from the pump. Having something written down has always helped me to get doctors to take what I am saying more seriously.

In addition to recording the time, type and amount of pain, you might want to include:

-- what you were doing when the pain hit (to help identify triggers);

-- when specific pain problems improved and by how much; and

-- what medications you're taking, the dose and what time you took them.

Best of luck in getting your sister some relief, Inseek.

--THC