Pain Pump (Intrathecal Pump)

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NinaNina
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 10/31/2007 11:46 AM (GMT -7)   
Has anyone out there gone through an implant of a pain pump (intrathecal pump) for pain relief?
 
I already have a Medtronic neuro-stimulator on the right side for a specific back/leg problem and it is working well...but it doesn't (and can't) offer relieve for the pain in the coccyx/pelvis area.  Both my neurosurgeon and pain management specialist are recommending a Medtronic pain pump as I am on very high and frequent doses of pain medication that are not overcoming the pain problem.  One doc is recommending using either morphine or dilaudid for the pump, the other doc is recommending a mixture of morphine, baclofen, etc. 
So much for the beach bikini!  yeah
Any thoughts, comments, etc. are very much appreciated!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 10/31/2007 12:20 PM (GMT -7)   

Hello Nina,

Yes I have a Medtronic Pain Pump and its the best thing that could have happened to me. I do not tolerate medications well at all, limited on what I could take, then had to keep increasing the dose to no avail. Now, with a concentrate going directly to the pain receptors in the spine, I am on much, much less medication and my liver loves me for that. There was no way oral pain could handle the amt of pain I had in so many different areas of the body and my pain spec said this is the best option I can give. Plus, I have a wider variety of medications that can be used in the pump. I have a cocktail in my pump, thats what I call it, 15mg of Dilaudid, Clonopin, Sufenta and one other drug, its work like an anesthesia type drug.

The most difficult time I had was getting the doseage correct. They always start at the lowest and work their way up. Once we started getting in range it made a huge difference. In  the beginning I had Morphine in my pump, not only did it not help my pain but made me feel awful. Thats when we switched to the Dilaudid mixture and the Dilaudid is my main drug in the pump.

I stuck my head in the sand when my dr approached this subject. It sounded so final in many ways. Once I got past that, in less than 3 months I was begging for it.

Considering the problems you are having I would give it a shot. You will do a trial so you will know then it its going to work for you or not.

If I can answer any questions please let me know.  Susie 

 



NinaNina
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 11/1/2007 11:29 AM (GMT -7)   

Hi Gramps...so sorry the pump didn't work out for you.  5 years seems like a long time for useage and then removal.  I would be very interested in hearing your experiences...it won't sway me...but I hope it will give me more information.

You are absolutely right about Medtronics...you have to read the very small print for complications.  My doctor gave me an excellent printout of a study done on complications, etc. resulting from pain pumps (non-Medtronic study!) so I would have all the information before making a decision.  Always scary stuff...but so were the last 6 surgeries!  Please let's hear more from you...............but I understand if you are not comfortable in giving out so much information.

My family doesn't understand why I',m even considering the pump.  I get so tired of either faking an "oh, I'm OK - thanks for asking" or telling the truth and when I have a "meltdown".  Do any of you have "meltdowns"....when you reach a point where everything seems like you are on a blaring, spiraling, painfilled merry-go-round that won't stop??

Nina


NinaNina
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 11/1/2007 11:34 AM (GMT -7)   
Straydog.... Thanks for all your information about your pump. Did you start off with only morphine and then a combo was suggested? My neurosurgeon is recommending a "pure" drug - probably Dilaudid since I don't do well on morphine. My pain doctor is recommending a combo mixture w/Dilaudid. How to choose??? Nina

NinaNina
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 11/1/2007 1:46 PM (GMT -7)   
Dear Gramp, Thanks fo much for your great summyar of your pump experience. I have never heard of "Prialt", but will remember it going forward...it sounds horrible. I'm not surprised about the 5 surgeries for the pump....which is a big concern for me. My pain stimulator was 5 surgeries last year...."all were surprises", to the doctors but in the end had quite an emotional impact on me...not to mention the physical problems over a 4 month period...so much for the original estimate of only missing work about 2 weeks!

What are you doing for pain relief now that the pump has been removed?
Was the insertion of the pain pump a "...last resort" for you?

Nina

Circa1988
Regular Member


Date Joined Aug 2007
Total Posts : 90
   Posted 11/2/2007 11:36 AM (GMT -7)   
I remember reading about Prialt and they hailed it as some kind of miracle drug. A pain killer made from snail-vemon which does not cause dependency or addiction. Well I guess nothing is as good as it seems huh? Are those side effects common or what? Anyway I guess everything has its downside.

I hope that you can get your pain under control NinaNina, good luck with that. I have also heard stories of good and bad with the pain pump, though I dont have any experience with it myself. I hope you find some relief no matter what route you take.

I hope everyone has a pain-free day,
Circa

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/2/2007 6:26 PM (GMT -7)   

Hi Nina,

Yes, when the pump was first put in my pain mgt dr had Morphine put in my pump. Why I don't know, I could not tolerate oral Morphine. It just flat made me feel awful. Unfortunately, he forgot this. I think most people do better with a combination of meds in their pumps overall. For BT pain I have 2mg of Dilaudid, I try very hard to stay away orals meds. Once in awhile if I have really overdone things really bad, then I do have to take one. I probably take more muscle relaxers than anything and I truly think they help better than more pain medication.

I read what horror Gramps went thru with his and thats just tragic. I cannot begin to fathom what he went thru. I am somewhat curious about the dr that implanted it. I feel  like anything else, a person could get a bad pump, or ever a bad stimulator. Mine must really be in there good, because I have taken numerous bad falls and I have not harmed the unit in any way or compromised the catheter. I was oxygen deprived and falling alot, now on oxygen no more falls as long as I stay on oxygen. This has nothing to do with my pump.

I am thinking the pain clinic bills my ins around $600 for my pump refill and they pay either $200/$300. Thats for a 90 day supply. I do not pay for any of these charges except my copay for the office visit. For me I spend less on medication a month, per year with the pump. My meds come already mixed in a kit from a company here in Ft. Worth. There is no measuring or mixing at the drs office. My nurse is exremely cautious on refilling pumps. I don't think she could get things anymore sterile and that is a must. She even wears a mask & disposable gown. She does all the pump re-fills. I am very thankful that I have a nurse that is so professional.

My daughter has a friend that underwent back surgery and never did well after sugery. She has a tremendous amount of low back and leg pain. Its questionable if the dr nicked a nerve during surgery. SHe has the stim implanted and it did nothing for her. Finally, her pain dr asked if she would try the pump and she did. She is doing so much better. Before & after surgery she was going to ER every other evening to get a pain shot. She is no longer doing this. I just pray it continues to work for her because she went thru alot of suffering.

By the way the pumps are implanted high up on the right side. Its above the beltline in the front. They had to change where they were implanting them orginally it was about waistline. Alot of catheters were pulled loose because of people wearing the waist of their pants too tight, tight blue jeans were a real problem too.

I hope you can figure out a way to get you some relief too. Susie

 



straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/3/2007 10:13 PM (GMT -7)   

Hi Gramps,

Like I said I cannot fathom what you went thru with the pump. Was anyone ever able to give you any kind of an explanation as to why you had all these problems with the pump? Did anyone from Medtronic ever offer up any sort of an idea as to why you had so many problems? I just think its awful to keep putting a person thru surgery like that over & over. Yes, I had a very nice lady in OR with me from MedTronics.

I pray that you can be seen soon by a dr and someone can offer a dx & treatment. Hugs, Susie

 



northerngirl
New Member


Date Joined Nov 2007
Total Posts : 1
   Posted 11/13/2007 8:09 PM (GMT -7)   
VIEW IMAGEI have a medtronic pain pump 2 years now and it gave me back my life.I work full time. I have had no problems with it at all, and do exactly what PM Dr says who manages it. Only residual issue is burning in left foot but controlled with Neurontin2-3x day. I went through years and years of pain in back. I thank God all has gone well  from listening to others.

cyndilphs
Regular Member


Date Joined Nov 2006
Total Posts : 26
   Posted 11/16/2007 8:03 PM (GMT -7)   

Dear NinaNina,

I just want to list the facts that I experienced as a 4 year medtronic pain pump patient.

1 I had been in the medical field prior to the pump and researched and studied everything that I could get my hand on befor being implanted.

2.I had the surgery doene in one of the top universities hospitals and my pain Dr. was one of the best, he was also a practicing anesthesiologist for the university and was accompaied by one of the very best general surgeons. ( I went through the trial implant and thought that I had been saved from the pain of multipal illnesses)!

3. I went through the surgery fine. However, after the surgery they failed to tell me that you will go total withdraw of any oral pain relief that you had previously. It was HELL until they could get the pump going and they started with very low doeses of meds until any relief at all was felt.

4. As Gramps said the expense is huge!! The follow up's rushing to the Dr. to have boluses for extra pain relief were many.

5. My pump twisted and turned in my abdomen all the time, I went through as many as 21 sticks at one time just to find the small port that must be alighned to fill the pump. ( This was a problem at just about every fill, also ask about the needle that it takes to fill the port)!!

6. Finallly the batteries on my pump went bad after 3 years, this was after many, many issues with med problems, kinks, twists, etc.

7. I went in to have the batteries changed as a one night stay, and ended up with septic and staph and underwent 2 surgeries in 3 days, ( two abdominal and two spinal)!! I was in the ICU for weeks with infectious disease doc's not expectimg me to live...

8. Now I live with MRSA and terribal bulging scars on my abdomen, and arthritis of the spine that I need even more opiates for dailey..

9. Just one thought for you ninanina, once you have had a intrathecal pump implanted it is like a tatoo, you will ALWAYS know and remember and live with that.

I wish you a lot of luck and I pray that you do research this comepletely. I must tell you though that you will forever forget the bikini line!!

I wish you the best pain relief possiball, this is just my experiance as Gramps was just his experiance,

Hugs,

Cyndi


crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 11/26/2007 3:20 AM (GMT -7)   
confused  Wow,
I am relieved to have so much info on the pain pumps.I have been really considering it because I cant get any significant relief from my meds. (dilaudid,cymbalta,lyrica and sometimes muscle relaxers). I have had crps for 3 years and have had extensive surgeries,including the spinal cord stimulator that had no relief from and recently had it removed.(it took 10 hours to put in, and 1 hour to take out).
 
  I feel like I'm running out of options. The next one is to take all the nerves out in that area and hope it dose'nt spred to another area(right foot).They tell me I need a plastic surgeon for this one. I go to Beth Isreal Pain Managment in Boston and trust thier opinions, but so far from all the blocks and screws in my foot none of the procedures seemed to have any real help for me. I am very unsettled about the pain pump and scared of more complications. I just wish a day can go by without having to feel all the guilt,pain and the sence of not beiing involved with my wife and kids activities. I try, but cant keep up their pace.
 
  I would appreciate any input for the nerve removal info that anyone has had or has heard.
                                 Thank you everyone for sharing
                                                         mike 
 
 
 
 
 
 
 
 
 
 
 
 
 

crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 11/26/2007 11:58 PM (GMT -7)   

Gramps,

  I cant thank you enough, by just giving me a honest and experienced reply. In the next couple of weeks I will be seeing my pain mngmt and also a new Brigham and Womens pain mangmnt also in Boston. All of the above will be introduced and maybe like you said, I may have a better picture of what is best for me. All I know is, right now, I feel as though I'm living in a slow painful death that has had a multitude of procedures and surgeries that have absolutley no help. I see what your saying by them taking out the nerves, where will the pain stop, or keep on climbing or never ending?

I will bring up the pain pump procedure at pain mngmnt to find out how evasive the preliminary injections are and like you said how well they work. I will also look up phantom pain and get an understanding about that as well.

Thank you again it's nice to have some credible feedback!

                mike    

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