Question re: Intrathecal Pain Pump

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MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/1/2010 7:37 PM (GMT -6)   
Hi everyone...I hope this Tuesday evening finds you safe and content, with as little pain as possible.

I have a question about the Intrathecal Pain Pump and it's use. Is this something that is only considered for people suffering damaged nerves and disks in the spine, or has it been used for people who suffer overall body pain from Fibro/Myofascial Pain, etc.?

I've been wondering about this after going thru a couple of weeks of real discouragement. I know that I will have Fibro pain for the rest of my life. It appears I'll have pelvic pain for the rest of my life as well. There is a good chance that surgery will relieve me of the constant hip pain I experience and both hips will probably have to be done.

So...if I know that I'll always be dealing with Fibro and pelvic pain, is a pain pump a possibility for providing better pain relief with fewer side effects, or do I stick with swallowing a bunch of pills day after day, with side effects and the likelihood of increasing dosages?

I'd love to hear thoughts about this - I truly don't know if it's a viable option to discuss with my doctor or not.

Thanks in advance!

hugs,
Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


donedeal2424
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 6/1/2010 8:02 PM (GMT -6)   
Yes hello! I had a pump put in Dec 09 it was my third broken back and at that time I was told they really do work best for backs. Since Ive
had it in it has helped with my back pain greatly its been wonderful. But I do still get pain in other ereas.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2840
   Posted 6/1/2010 9:19 PM (GMT -6)   
Hi Pam,

I don't know a whole lot about pain pumps other than what I have learned hear, but my understanding is that they can be used for any pain that is responsive to opioids. The pain pump is just a more direct way of delivering the medication to your system & thus you can use much smaller amounts of medication and get similar (or better) results with less medication and less side effects. There are several members here who do have pain pumps (like straydog) & so I'm sure that they can tell you much more about how they function.

I think that it would definitely be worth discussing this with your doctor. The worst thing that can happen is that he says that you are not a candidate or that he doesn't think that you are ready for such a device that this time. There is certainly no harm in asking for information.

Best of luck to you in your search for information!

hugs,
Skeye

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2018
   Posted 6/1/2010 9:59 PM (GMT -6)   
I don't know anything about then and for me having tried what seems to be all the opoids i guess a pump wouldn't help me with my pain.

Ms. Bunky I did want to ask you about your myofascial pain. I have been diagnosed as that but that seems like a large are diagnoses if you know what i mean. I suffer from constant temporal headaches. I would like to learn about your case if you could email me or send me a private message. Not sure how that works but i could send send you my email if you wish.


thanks and good luck with getting info , i am sure there will be many posts once they get on here.
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


Blessedx8
Forum Moderator


Date Joined Aug 2008
Total Posts : 3190
   Posted 6/2/2010 11:58 AM (GMT -6)   
Hi Pam...

I wrote you a long response yesterday, got up to do something and lost it cry Anyway, I'll be back on later to respond again :)

Hope you are doing ok today... --Tina

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 10584
   Posted 6/2/2010 1:31 PM (GMT -6)   
Hi Pam,
 
Yes, I do have a pump and thanks to a new PM dr a a little over a year ago that has awesome knowledge of pumps and the medications used in a pump, life is much better in the back pain dept for me. My pump is for low back pain and that is all it addresses. It is not for overall body pain. Meaning, when I am having bouts of cellultis pain in my legs and feet it does nothing for that pain. I became a candidate for the pump because I am allergic to many, many medications including pain meds. We ran out of pain medications that I could tolerate, if I wasn't allergic to them, the side effects got me. From what the drs told me the pumps are reserved for folks that run out of options for medications that work on their pain. That can be from even use of high dosages. A pump will not help nerve pain because most pain meds do not help nerve pain, you need a medication that is designed for that specific pain.
 
I do not think a pump would help someone with Fibro because the pain is spread out all over different areas of the body. I could be wrong I would ask the dr this question. The people I know that have pumps are people with back problems and that is what the pumps works on. I have a Medtronic pump and I think if I were you I would visit Medtronics web site, they have info there that may be worth reading. My pump is implanted in my stomach  and then an incision was made in my back and a catheter was fed around to the front to the pump. I have a constant steady drip of medication that goes into the intrathecal space and drops where the receptors are. The pumps do not come without drawbacks and serious ones. Personally speaking from my own experience with a pump, you must have a dr that is fully educated in both pumps and the medications used in pumps, it can't be one way it has to be both. Anesthesiologist turned PM drs are not in my opinion qualified or educated enough in both areas to handle a pump patient. My original pump dr was exactly this and he mismanaged me and 45 other pump patients grossly. But, we were all ignorant about pumps and we believed what he told us and we suffered terribly because of his ignorance. The other problem you may run into and they do not tell you this is, once you have a pump put in, finding another dr to take over your care is nearly impossible. It is very hard to find another dr willing to take an existing pump patient on. We were not told this either.  I do not know if it is a liability issue or if the new dr thinks the person should not have a pump or what. My current dr is a retired neurosurgeon that is just awesome. She mixes her own compounds in her office for the pumps meaning no waiting 2-3 weeks for new meds to come in if you need an increase. She does it all right there, the lady is brilliant.
 
If you can manage your pain with orals meds I would say stick with it. I know its tough living like that, we become clock watchers and always have to wait on the meds to kick in and start working. I still take oral pain meds with my pump because you are always going to have BT pain even with a pump. But, not all drs believe pump patients should have oral meds, thats because they are not educated enough. Even with the pump I still have back pain and always will. When I saw my new dr for the first time she was totally floored at the condition I was in. I was bent over because I could not stand up from the pain, even walking with a cane for support. My concentration dose in my pump was 15mg, and I got a little over one mg in 24 hrs which was nothing. She had a copy of my medical records that she had reviewed and she said no patient should have a constant 9 on a pain scale for 2 years like I had. She said I had been grossly under-treated as a patient and my pain had been grossly under-treated. She was shocked when she saw me. She asked me how I had managed for the past two years and my answer was "I have got use to the pain". She said you are right, a person can become use to pain. She said you don't have any kind of a life, do you, I said no, not for a very long time have I had a life.  She patted me on my shoulder and smiled real big and said " I am going to fix that", I will have you up and running with the best of them, lol. My concentration dosage in my pump went from 15mg to 37.5 mg quite a jump, and I receive now almost 9mg in 24 hrs, plus my BT meds went from 2 mg top 8mg.  And most important of all I have a very long way to go before I max out my dosage in the pump. My former dr told me that I had maxed out my dosage in the pump and could not go any higher and I believed him. So, when he retired and went back to anesthesiology, he did 45 of us patients a huge favor. He has no clue what that did for us. Now you understand why you need a dr very well educated in pumps. I thought my first one was but oh was I ever mistaking. I am getting close to time for a new pump to be installed because the batteries go out and you must replace the entire unit. I will have another one put in but it is a rough surgery, because you have two good size incisions to deal with. I cannot imagine life without a pump. Also, with Medicare and secondary coverage I pay almost $56.00 every six weeks when its refilled, its not cheap. Also my pump is a 90 day pump and my dr changes my meds every 6 weeks because she said leaving the meds in that tiny space they lose their effectiveness, other dr let me run nearly 90 days, lol.
 
If you have more questions ask, I will answer them if I can. Take care.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/2/2010 9:47 PM (GMT -6)   
Straydog, thank you SOOOOO much for a wonderful explanation of the pump and it's usage and how it works in your life. You have been more than generous with your knowledge and experience and I am so, so grateful!!!

thanks to the rest of you as well. It's good food for thought. I am still able to take oral medication and have it work (or at least work as well as anything will), so I suppose it's just easier to continue like that. I was very curious about it's usage for Fibro, but it doesn't sound like that's the best way to use it.

Thanks again, you've given me much to think of and to research.

hugs,
Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 10584
   Posted 6/2/2010 11:01 PM (GMT -6)   
Pam, glad I could answer some questions, but still just to make sure, I say ask your dr if the pain pump is used and is successful in treating Fibro.. We have kicked the can around many times on the pumps here like most stuff, lol. You may want to use the search here, type in pain pumps and a bunch of info should pop up for you. I gave you what I will call the quick version just to help keep the costs down for owner of this site. Peter is charged per letter we type here not by the post so I wanted to keep it as short as I could but give you some decent pointers at the same time.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


squeakydog
New Member


Date Joined Oct 2010
Total Posts : 2
   Posted 10/3/2010 4:04 AM (GMT -6)   
Thanks very much for the info -- I'm hoping someone still sees this even though it's months later! I found it through google groups. Anyway, unfortunately, my pain dr resigned, and the new dr is an anesthesiologist/pain specialist who has said I either have to get the pain pump or find a new pain dr because he will not prescribe medications. My history is I've tried most pain medications -- oxycodone/hydrocodone/vicodin make me throw up, Fentanyl patches were almost useless on the 3rd day and no one would prescrive 2-day instead of 3-day replacement, IV morphine worked but that was replaced with methadone for complicated reasons, my QT interval recently got too high with methadone so the new pain dr has replaced it with oral IR morphine for a month until I "acquiesce" and agree to get the pain pump. He makes me extremely nervous because he knew how reluctant I was in my first appt with him and yet he still had his nurse present me with a surgery consent form at the end of the appt. Fortunately, she said I didn't have to sign it right then.

But honestly I don't really know what to do. This town (State College -- in central PA) only has one pain dr, and my primary care dr has refused to take over my pain medications. Supposedly there's a pain center in Lewisburg, PA (couple of hours from here) that I guess I'll have to check out.

I have different types of pain -- mainly abdominal pain from paralytic ileus. and 2 different types of rectal pain -- one from nerve damage in my back that also made me incontinent and one from diversion colitis. I'm really scared about this pain pump thing -- it just sounds like too many things can go wrong. Plus I don't know if it will help my pain -- the pain dr and the theory say yes but what about in practice? Will it help my abdominal pain? I know there's a trial but when I asked the pain dr what happened if the trial was unsuccessful, he said "it won't be" and refused to talk about alternatives. Doesn't sound like he's going to believe me if I have pain with the pump. No idea how he'll try to control my pain if the pump's inserted. He did say the meds are replaced every few months. If they try different types of medication in the pump, can you get withdrawal symptoms while exchanging one for another, if you've been on the first for a while?

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/3/2010 9:36 AM (GMT -6)   
 
 
   Dear Squeaky Dog,
 
    I started a new topic for you in the hopes that you will get better response to your questions. Here is the link
 
 
*hugg*
  dani
 
 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 10/5/2010 12:10 AM (GMT -6)   
Hi Squeakydog:
 
I have been suffering with CP for 15 years and have had an intrathecal pain pump for about 8 years.  I have had a Spinal Cord Stimulator for about 10.  Several things about your post alarm me in reference to your PM doctor, and even if it means you have to travel, I would strongly recommend that you get another opinion or better yet, switch doctors.
 
First of all, no doctor should be "bullying" you into having a pain pump implanted.  They are not by any means a "replacement" for oral pain meds, and I do not think that a pain pump is even indicated for the type of pain you are suffering from.  As Straydog said, they are for people with back/spinal pain who have exhausted all other forms of pain management. 
 
My pump was implanted for pain at L5/S1 and L4/L5, and over the course of time other discs in my spine have degenerated and herniated, and my doctor has explained to me that the pain meds don't "travel" up and down your spinal cord, they pretty much stay in that localized area where the cathetar is placed, so I do not believe they would be useful for any other kind of pain.
 
You may want to talk to someone about a Spinal Cord Stimulator - they can be used to relieve pain in many areas of the body from the point of implant in your spine down to your feet. 
 
Both of these devices have pros and cons, and most doctors do a several day trial to measure how successful the devices are at managing your pain, and your input is vital and should be taken very seriously. 
 
Most people with these devices, myself included, must continue to take meds for breakthrough pain as well.  For a doctor to try to force you off of oral meds that I assume are managing your pain (otherwise you would not want to stay on them), is scarey and I think you need to run (not walk) away from him.  I know it may mean some traveling on your part, but a good pain management doctor is worth it  (I travel 2 hours each way to see mine).  The fact that he would even suggest this makes it obvious that he is not knowledgeable enough about pain pumps or the medications that go in them, and for a pump to be a success, the doctor MUST be knowledgeable in both areas!  The doctor plays a huge part of whether a pain pump is successful or not.
 
My intrathecal pain pump is in need of changing (the battery in them lasts about 6 years), which I am having done on Thursday, so I will be hit and miss on the forum, but if you have any further questions or concerns, please feel free to post them and either I or one of the other members with a pump will be happy to answer them.
 
Take care,
Lorie

heidelynnrei
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 4/9/2012 11:17 PM (GMT -6)   
pain pumps can get adhesions/scar tissue formation too...soo please consider if it does not agree with you, mine in 1992 made me swell up 40 pounds of water in legs and they shut it off and it is still in and causing severe pain bloating and partial blockage, total constipation and had a hernia repair across low belly 3 years ago left me bedridden for 3 months, pd told me no pain meds bc could be megacolon .oh and the morphine masks the pain under the pump and stops transit of food so it is a catch 22 and do not know if they tell you this stuff before they put in. DR that put it in in 1992 lost his license in Ca and still cannot practice here. The dr that turned him in to the state board very unusual, but he was fixing all his mistakes and the dr was not warning about withdrawl.( because he did not know it) I have been on oral meds of everykind since 1984 dx with rsd 3 back surgeries, ddd tos, some kind of colon problem,needed 2 knee replacements for 18 years but I am afraid of any surgery since everyone had to be redone 3 times...and they pronounce u cured once they have performed surgery.. please look at pros and cons..I was not told about mesh or adhesions and my belly has left me totally in bed with no good days or even hours...now with numb face and teeth ugh I am taking zanax and soma and was on oxicodone 30 mg 8 a day but gave my last 2 scripts back to my great pain dr and told i needed to go back on a weaker med like perocet10 which will block the pain because it stops the digestive tract from moving at all....hopes this helps someone and saves them the torture I am enduring now....and research other sight ..there is one on on pain pumps started by a man in Hawaii...all the good and bad..only place I have seen complaints it may be an off shoot of webmd or another sight but he started it in 2007 and still is active..i found by googling morphine pumps..really eye opening....good luck heidelynn
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