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colerg back again
New Member


Date Joined Apr 2008
Total Posts : 19
   Posted 3/23/2009 12:16 PM (GMT -7)   
I have been mulling over the idea of a pain pump. i am a great candidate ..so my doc says... has anyone had any experience with one. I could use some input. thanks

COLERG

p.s. nice to see some old familiar faces, here!

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/23/2009 3:54 PM (GMT -7)   
Hi, Colerg,
I wanted to say hello, but I don't have a pump but there have been some fairly recent detailed threads on the topic. Try to search HW.

PaLady

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/23/2009 6:50 PM (GMT -7)   
I have had one for several years, and I don't think I could live without it. I don't know exactly what kind of info your looking for, so if you have some specific questions - I'd be happy to try and answer them. There has been some other posts about this subject as well about two weeks ago I would guess, if you want to look back and try to find them.

I also have a spinal cord stimulator, and for me, the combination of the two is what gives me what relief I do get, along with some oral pain meds as well.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/24/2009 10:33 AM (GMT -7)   
I am glad you posted that information, Susie. It seems like it would be fairly easy for
any experienced pain doctor to do a fill on the pump. If I had the right solution, perhaps
I could do it.

What's the problem? Why is so difficult? My pain doctor is going to retire or die before I'm
through with him. That's something to think about as I consider getting a pump.

That's what the MRI's are about. I want proof that I'm a good candidate for the pump.
I don't want to stop feeling pain and suddenly my arm falls off. Understand?

My poor shoulders can feel such pain!

Later, Susie Q.

Pamela

colerg back again
New Member


Date Joined Apr 2008
Total Posts : 19
   Posted 3/24/2009 11:44 AM (GMT -7)   
Bluejet and Straydog

Thanks, I am really at the point to where I think this is the next step in my life. I have had four back surgeries, fused l3,l4,l5,s1, and my right SI joint is also fused.I have chronic sciatica as well.

I am curious as to how hard is the surgery, recovery? Is the pump a hindrance with any activity? How painful is the filling/ refilling the pump.? Does the pump make you woozy, have you had any respiratory issues ? Does the pump work on a schedule, or can you increase or lower the dose at will?.....also do you take oral meds with the pumP?

I REALLY appreciate any help...I am a bit scared, but my PM doc says I am a GREAT candidate. I'm tired of taking sooo many meds.
Thanks so much for any insight!!!

COLERG

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 3/24/2009 2:08 PM (GMT -7)   
Hi Colerg,
 
I will answer as honest as I can. The surgery is like any other. Considering how many back surgeries you have had, the pump inplant should be a piece of cake after what you have been thru. With your history you probably are a very good candidate. Most folks say they are pretty close to being healed at 6-8 weeks. You have an incision in your back, mine about 5 inches where they fed the catheter thru to around the front to connect to the pump. You have an incision about that size depending on the unit on the side of your stomach, up high, not at waist level.
 
When my pump is filled I have no pain. The first 6 months my stomach was numb after the surgery. Then the feeling came back, I promise, its pain free procedure on a pump fill. I have had a dr plus 2 nurses fill my pump before and none of them ever hurt me at all. Matter of fact, my nurse that fills my pump now is so fast at pulling the old meds out and putting the new in, we are done before I realize she is finished, she is awesome.
 
I am on oxygen 24/7 and I have no respiratory distress from my medications. Matter of fact, my new pain dr was telling me recently they are talking now that not all pain meds cause that problem. If you get woozy with a pump then your medication is too high. So, then you call your dr and go in for an adjustment that is done by a computer, thats it. When you need your meds increased its the same way, done by computer, how easy is that.  But, no you should never be woozy with a pump. I drive a car whenever I want, I have a 3 yr old grandson that is my life, I drive with him in the car. If I thought for one single moment I was jeopardizing his life he would not be in a vehicle with me.
 
When you first start with a pump you are always on the lowest dose to start with. Then they start titrating the dose up. Insist that your increases in the beginning be done every 2 weeks, thats totally acceptable. Do not let a dr leave you hanging for a month at a time for increase in the beginning. Not all drs give oral meds for BT pain. Some have the attitude the pump takes care of it all and thats not true. You miust have meds for BT pain. If your dr says no to BT meds get another dr ASAP. Both of my pain drs believe that a patient must have meds for BT pain. As you get the doseage in the area you need it to be you don't take hardly any BT meds. The pump will not make you pain free. You will have pain the rest of your life. What the pump does is control your pain in a much better fashion than oral meds. Your pumps drips meds out 24/7 so you have a steady flow of medication. You have no high or no lows and best of all no clock watching.The way the pump is designed the catheter is located in the area of the spine where the pain receptors are located that send the signal to the brain pain. The medication is released on these receptors and stops sending the pain message to the brain. I imagine your quality of life stinks, mine did, I spent one yr in bed. The pump is to help you get a life back that is quality life, not the old life you knew, but a hell of alot better than where you are at now.
 
You will have some limitations with the pump. They say to avoid all high frequency areas because it can affect your pump. I don't really know what you are wanting to do activity wise with a pump so its a little hard for me to answer your question some what.  Like I said, I drive a car, I go to the grocery store, if I want to shop I do, I plant flowers, I put in 3 flower beds last summer, I have mowed my small back yard my former PM dr had a fit said no more. I will ask my new one that question. You can get on an airplane but the altitude may stop the pump from working for a bit. No bullriding, no stock car racing, no wrestling, I don't think I would do jumping jacks, water sking is out & snow sking. I am giving you a hard time, can you tell,lol. You don't want any sudden jolts or direct hits to the pump. I feel right now you are limited because of those fusions so really this pump will not have an adverse affect on you. You have to be very careful having any future MRI's because of the magnetics on the machine will make your pump possibly get warm and stop it from pumping.
 
The first 6 weeks after surgery are really critical cause you want that scar tissue to heal good in there to keep that pump in place as well as the catheter staying in place. My pump was put in June of 05 and its an older model. They have newer models out, I have a Medtronic, new ones can be programmed to give yourself a bolus which is like giving yourself a pain shot only no needles involved. You need to keep a journal of your pain in the beginning and once they get your dose right. Lets say you notice every evening by 8:00pm, you are really having some pain and that pump can be programmed to give you a bolus every evening at 8:00pm. How cool is that. Maybe my next pump I will have that luxury, but quite frankly, once I got my pump, my goal was to get off of oral meds. I did just that and I did suffer, I am bull headed to say the least and I also push myself. I am my own worst enemy sometimes. Now, my new dr gives me 4mg of Dilaudid that I can take for BT meds and I can take 2 of them at one time.
 
When you first get your pump you are very conscience of it, I was. I was afraid I would hit it on something and break it. Well, I have bumped my kitchen counter and also bumped it reaching down in my deep washing machine. Let me tell ya it smarts when you bump it directly. After time goes on you forget about even having the thing. I wear loose tshirts always have, so no one can even tell I have one. I truly forget its even there. You do need to avoid things like alot of bending and reaching but you are already there.
 
There are many different types of medications that can be used in a pump. Different combinations. I have Dilaudid, Bupivicanine, Sufentanyl & Clonodine in mine and now that my new dr knows all about pumps I am doing great. My former pm dr was not educated enough in pumps or medications. He was a good dr but he had no business taking care of pump patients. He had me on such a low dose that I was not functioning too well. If I did something one day, I spent 3 days in bed recovering and thats not how its suppose to be with a pump. When I complained of pain he said well you are on the strongest drug there is!!! Yes, I was on the strongest drug but he had me at a very, very, very, low dose. My current pump dr is a retired neurosurgeon, she also has inplanted pumps but now just handles nothing but pump patients. She was tired of surgery. She is the number one pump dr in the state of Texas, has more pump patients than any other dr, she is the top writing narcotic dr in the state of Texas and she is not afraid of the DEA, she has over a decade of experience, she understands compounding drugs and does her own mixing. The woman is a wizard when it comes to pumps and the drugs that can be used in them. Not all drugs can be used in a pump. When she filled my pump for the first time, she doubled my concentration level of Dilaudid, what a difference it made in my pain. Since then I have had a 20% increase and that really helped. But, I am still at a very low dose and have a very long, long way to go before ever maxing out on it. By the way, you actually do use less pain meds with a pump than what you do with oral meds. 
 
All I can tell you is this, these cats that open up pain clinics   most use to be anesthesiologist. There is a big difference of putting someone to sleep for surgery over handling a pain patient. Four years of pain mgt experience is not enough time to be educated in handling pumps.
 
I apologize for the length of this post but there is so much more to tell you. I will stop here. If you think of something else post it. I have a 90 day pump, but my new dr changes the meds every six weeks. She says the meds lose their effectiveness sitting there in that little pump. My pump is about the size of a hockey puck, maybe a little smaller.If I can answer it I will. Susie
 
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 3/24/2009 5:50 PM (GMT -7)   
Pam, you know it may sound easy but to find a good PM dr is like looking for a needle in the haystack. We read posts on here every day as to how some of these folks are treated by these guys and its criminal. For some of these cats they have the mentality as being a PM dr they do not have the normal standards we like to see drs go thru. Being educated in pain mgt and medications, not view all patients as drug seekers, try to find out why a person is hurting instead of acting like they are exaggerating their pain, compassion, courteous, be professional and not hang pain medications over our heads like we are dog waiting on the bone to drop. These are things we look for in a reg dr, why is it so difficult forr PM drs to be this way is beyond me. I have been very lucky for the most part, my 1st pain dr was a decent guy very caring, my current doc is a gem. Not everyone has this luxury and medical care should not be a luxury. Its so sad to see how so many are treated, I wish it were easier. Susie


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 3/25/2009 12:33 AM (GMT -7)   
Hi Coleberg,

You have been given a lot of good advice by straydog. Pam is right the doctor is totally important and ideally needs to be someone who is both competent, informed and compassionate (if such a super being exists ?)

I have a pump and it has given me my life back. I have SPMS and only have baclofen in the pump which eases the spasticity which caused the extreme pain. I know that you have more complicated issues but the pump is good because the drs can put in a combination of drugs & you need far less for it to be effective and also you can take breakthru oral drugs as well. Two things to bear in mind are that you will need to have a trial to ensure that the pump will work for you & this involves injecting meds into the spine & then seeing if you feel less pain. I did not find this painful at all, I think because they numb the area first. The refill is more painful though that is only like an injection. The second thing is I understand that it takes a while to get to the magic dose that works for you. I had pain relief withing 12 hours but took several weeks to get the dose right for the spasticity.

Of course, my MS has not gone away but now I am able to sit, lie down, work part time, drive around, do shopping even a bit of gardening none of which I could do before getting the pump. I love the pump and can not imagine being without it. Good luck
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/25/2009 3:54 AM (GMT -7)   
I am waiting for the results of my mri. If I'm a good candidate for the pump, I want to get it. I can't do anything.
I'm in pain (7-8) most of the time. I take Methadone and Xanax. Sometimes I take a little Morphine IR. The
Morphine does nothing.

When I had a recent MRI they gave me conscious sendation with what should have been a good Opiod. I didn't feel
any pain relief AT ALL. None. I lay in that tube for a long, long time. Owww and Eeeeek. Next time I go in it
will be with a general anesthesia.

So ... Methadone blocks the action of Opiods. I'm worried about the doctor putting a long sharp cut with his
shiny scapel and me feeling every slice. Methadone works pretty good, but that sure is a problem. If I say
anything to my dear singing doctor, he will say "You worry too much" I know him!

Another question: Do they put Methadone in the pump? I'm sure he'll give me medication for between times
but Methadone doesn't work like other opiods. It would be fairly easy to give myself an accidental over dose.

I'll be seeing my Dr. next week. Miss Susie Q, Do you happen to have a list of questions for the doctor when
you're thinking of getting a pump. Could you make a thread of it? Test the thread making to make sure it
doesn't run way off the screen. Test it. Ask. And someone will tell you. Maybe me!

My doctor is a STRONG believer in pain relief. He's an anesthesiologist but the slice is made by another DR. in
the same building. I don't know what his qualifications are but I'm sure gonna find out.

Pamela

I caution people who start are thinking of Methadone. You won't be offered it unless your doctor really
trusts you. It's just kind of hard to manage.

colerg back again
New Member


Date Joined Apr 2008
Total Posts : 19
   Posted 3/29/2009 5:45 PM (GMT -7)   
Susie,

Thank you SOOO very much for your post.. very informative....I think I'm ready!...I go in in less than 2weeks, and we'll get the ball rolling...Did they do Psych eval on you for it? or is it just my doc? thanks again you as always are a wealth of info in the pain area.God Bless You!! C'mon Spring!!!

COLERG

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/29/2009 6:15 PM (GMT -7)   
Colberg,

I may follow you. I see my doctor tomorrow. We'll chat.

We are fortunate to know Susie. She's an expert. We can learn a lot more from her
than we could learn from a book or from our own doctor. Why? Because Susie is
a real personl

Pamela

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/29/2009 7:38 PM (GMT -7)   

I've had a pump even longer than Susie and she taught me a thing or two, or three, or four!!!  idea   

I just wanted to add that when the pump is implanted be very diligent in avoiding infection.  about a week after my implant surgery, I got an abcess/infection in the incision in my stomach.  I did not understand the possible serious ramifications of an infection from this particular surgery because the infection could have gone into the device itself and then spread through the catheter right into my spinal canal and caused bacterial menengitis.

If the infection had gotten into the device, even if it did not reach the spinal canal, they would have had to take it out completely, and there was a good chance that the insurance company would have looked at it as if my body had rejected the device and they would not have paid to have it re-implanted. I had to be on very strong I.V. antibiotics for 6 weeks.

I wish you the best!!!

Lorie

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

  

 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 3/29/2009 7:43 PM (GMT -7)   
Colerg, the psych eval is required by Medtronics. I had no problem passing mine. The purpose of the eval is to make sure you have realistic views on what kind of pain relief to expect from the pump. This is what I was told by by dr and another dr. I think my former PM dr gave odds of 50% relief, but I am here to tell you, since he really was not educated enough in pumps or meds he was way off his mark. With my new pump dr its just unbelieveable. We had a cold front come in and rack me, plus I have been working in the yard alot, nearly every day so I have really been over doing it. But, my PM doc says thats ok when the pain come back hard, I have plenty of room for increases in my pump and she is not afraid to give one either. When you do your trial you should feel wonderful, I thought I had died & gone to heaven. When your pump is inplanted at first, you will not feel that great because they start at the lowest dose and work their way up. Susie


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/30/2009 12:38 AM (GMT -7)   
There is a great yahoo groups dedicated strictly to pumps. It is called Pumpsters. The maintain excellent files and a reference section about pumps, medications, potential problems, etc. They also have a great professional referral list. It is well worth joining if you are considering a pump. Members are more than willing to help answer all of the odd little questions that come up.

I found them to be a great resource when I first got my pump and now they I a ready for a battery change, they had great advice. We are fortunate that we had several members with pumps here to ask questions, but odd things do come up and it is nice to have a large pool of pump patients to run ideas and thoughts by.

Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, neurostimulator, dystonia, neuropathic pain,  spasticity...etc..etc.


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/30/2009 12:19 PM (GMT -7)   
Stella Marie,

can never find my way into these groups, Stella. I'll try again.
It is true I'm getting excellent information right here though.

I might have Cervical Dystonia or Torticollis. Is that what you have?

Pamela

Straydog/Susie

Thank you for the Questions To ASk Your Doctor. It's right in time for my visit today.

Pam

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 3/30/2009 12:47 PM (GMT -7)   
Pumperster is a very good group but do not be put off by their posts. Alot of those people are having some very difficult times right now. Its like here, if we were all doing just peachy none of us would be posting.

Pam, glad you got the list in time-it was my 4th attempt at putting it together lol. Susie


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 3/30/2009 12:52 PM (GMT -7)   
Colerg, I have put a list of questions together of things to ask a dr when considering a pump. When I had mine put in I was dumb as a rock and had no clue. With my new pain dr and reading I have learned so much. I am far from being an expert by all means. If you are interested in the list let me know I can email it to you if you provide a an address. Its too lengthy to put on HW. I just don't want to see anyone as ignorant as I was I was when going into this new worls of pumps. They can be a wonderful way of a new life....Susie

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