Trial Pain Pump

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pell_lake_wi_cubs_fan
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/18/2010 5:28 PM (GMT -7)   
Hello,
I am new to this site and from good advice I was directed to start a new topic. Anyhoo I had a burst disc in 2005 and ended up wit permanent nerve damage to my syatic nerve (sorry if the medical spelling is wrong) down my left leg and a spinal fusion of L5 & S1. I understood the nerve damage was irreversable and dealt witn the shooting pains and numbness for 4 years. The the pain in my lower back and on top of my hips became unbearable. I saw my doctor who suggested physical therapy and Gabapentin along with Vicoden. Did not help. then referred to a orthopedic surgeon who referred me to a pain management doc. I had the steriod epidermal twice and the radio frequency to burn the nerve, (no help again). The had the neurostimulator trial, (no help, just added a new sensation that was uncomfortable). Now I just had the pain pump trial put in yesterday, I was just wondering if anyone has had similiar problems and doctors suggestions and wht their outcomes were. I so much want to get off the Percocete, I can not stand the side effects anymore.
Had spinal fusin in 2005, diagnosed with spinal stenosis in 2009. had epidermal steriod injection (no help), had radio frequeny procedure to burn the nerve (no help). Had trail pai pump procedure2/17/2010, still waiting for relief.


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 2/18/2010 5:40 PM (GMT -7)   
Sure wish I could help you, but I don't have a pain pump yet...However they're have been past postings on the trial and pumps that might help you.
And I would like to say I hope you can get relief with the pain pump! good luck with the trial...
keep us posted as to how your doing and there are a lot of others that will be by here to give a better reply to you.
((((((((((((((((((((((((((((((((Hugz)))))))))))))))))))))))))))))))))))))))))))))))
Hope you can get a low pain day.
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


pell_lake_wi_cubs_fan
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/18/2010 5:46 PM (GMT -7)   
Thank you Chartreux,
I Hope you can get whatever relief you can as well. Any other help with pros Vs cons would be greatly appreciated.
Had spinal fusin in 2005, diagnosed with spinal stenosis in 2009. had epidermal steriod injection (no help), had radio frequeny procedure to burn the nerve (no help). Had trail pai pump procedure2/17/2010, still waiting for relief.


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 2/18/2010 7:20 PM (GMT -7)   
I had my pain pump for 5 years and love it. However, you have to make sure that the doctor is experienced with pumps. AND I DO MEAN EXPERIENCED. Any wahoo can implant them. It is not rocket science. The secret to the pump is having a doctor that knows how to compound medication for the pump. Many times patients need a cocktail of mmedications, not just one. Without extensive pump experience you can find yourself in a very disappointing situation.

Stella Marie

Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, myoclonus, central apnea, collagenous colitis, joint and body pain, swallowing and respitory  involvement,  Implants: intrathecal pump & neurostimulator.  Extra features: O2 & wheelchair.

 

 


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 2/18/2010 11:24 PM (GMT -7)   
Hi... welcome to the board...

I'm sorry for all of the pain you are experiencing... sciatic nerve pain is the worst thing ever!! It sounds like you are now doing a trial for the intrathecal pain pump...outpatient, is this correct?

I had the pain pump trial at the end of '08. I ended up getting meningitis from the cathetar... It was a nightmare. BUT, I still could tell that the pump would probably be effective for me, though. It did reduce my overall pain...before the headache from h*** began!!

This, though, was after 5 years of being on every different narcotic there is, at about every different strength and combination. For me, I would try to exhaust the oral medication before getting the pump implanted - but that's just my opinion. Have you been on any long-lasting pain medication... like MS Contin; Oxycontin; Avinza; Duragesic Patches; etc??

At the end of the day... I've decided to hold off on getting the pump implanted. My oral meds seem to be holding me over for the moment. I always know the pump is there as an option... so that's a good thing. I'm also only 36 years old... so I want to make good decision for the long haul...because I don't think my health issues are going anywhere.

Well, I hope that helps some... and I wish you the best of success with the trial. Others gave you great suggestions, too. I'd search "pain pumps" and just do a bunch of reading...that's what I did when I first became a member a couple of years ago. Finally, Stella Marie said something super important... you really want to make sure you have a doctor that is experienced. I think that is the main difference between a successful pain pump, and - as Stella Marie said - being disappointed with the outcome.

Good luck to you... and keep posting!
Take care...Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; etc etc

Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation

Meds: MS Contin; Dilaudid; Actiq; Soma ; Neurontin; Atenolol; Midodrine; Phenergan/Zofran/Reglan; Effexor(depression)/Ativan(anxiety); Synthroid; Prednisone; and on the list goes...


BobinmidMO
Regular Member


Date Joined Mar 2010
Total Posts : 39
   Posted 3/28/2010 10:42 AM (GMT -7)   
Hi,
 
Did you have a test alreay to see if an Internal Morphine pump might work for you?  If you have, you would have known within minutes all on your own.  When I had my test, it was the best 4 hours of my life since the accident.  If you didn't feel any better right after they finished up - the needles were out, then I doubt if you're a very good canidate.  Now of course they might not have given you the right amount of medication so you'd really feel the difference, but that's rare.
 
Morphine pumps can save a life.  I'm now on my second one, and it gave me back my almost normal daily life again so I can't prise them enough.  They do have problems that go with them, so don't think their a panacea, but when you're in loads of pain 7/24, you'll do anything for it to ease up.  That's when it's time to get out the big guns.
 
I've read where 10% of all pain can never be cured, and that's rather depressing, so instead I just keep looking towards anything thing else I might have missed.  You're still hunting and so you will find a solution, but you can't give up.  Take care, Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time. In 2004 I got an Intrathecal morphine pump &5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time. 1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.  A year ago my left leg was ampuated above the knee after ging septic.  Guess that about say's it all.  Bob.


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/29/2010 1:49 PM (GMT -7)   
Hi and welcome to our little slice of nut-house heaven....LOL....But seriously, are you having some problems with the trial?  We have similar issues....I have perm. nerve damage, been through many ESI, PT, a Lamenectomy in 1999, and Spinal Fusion without hardwear in 2005..they used the stuff they took out during surgery in place of metal....and I still have serious pain.  I just had another MRI a few weeks ago and have major stenosis and DDD and now DJD. 
I take 120 mg. Methadone a day along with Oxycodone IR 30 mg. 4 times a day for BT pain.  I go back to the PM Doc on April 7th for my follow up and to review my MRI findings.  We are also considering a change in my meds.  He has brought up switching me to Opana ER 40 mg. 2 times a day...leaving me on only 80 mg. Methadone and hopefully he'll keep me on my BT meds.  He tried to change me to Morphine this past year but he didn't titrate it properly and thought that I could just do it mg. for mg.  so he only had me taking 120 mg. Morphine a day....I had withdrawls that first day!!   nono  No No No....can't have that/can we?  The pain scares me, but going through withdrawls scares me even more.
 
I asked him about the Pain Pump and he said that I would have to do a stimulator trial first.... NOPE...that won't happen.  so I guess I'm one of the people that will take pills for the rest of my life.
 
So, as you see we do have something in common....please let me know how it goes...I'm gauging my efforts to try this on how well you do or don't do....smilewinkgrin   Good Luck
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1700 mg. at night..Glipizide 10mg. 2X in the morning and bedtime
Lantus 50 units at bedtime with Solostar Pen
Byetta 5 mcg. 2X daily                                                                   

 


BobinmidMO
Regular Member


Date Joined Mar 2010
Total Posts : 39
   Posted 4/1/2010 5:36 PM (GMT -7)   
The pump is terrible?
 
I don't know where you're getting your info, but please listen to more than just one or more people who have had a bad experience.  I couldn't disagree more about pumps being bad.  They are a life saver though. 
 
When I've talked with people who were not happy about their pump, I've looked a bit deeper and these are the main reasons those people have not had the results they wanted.  First, they might not have been 100% honest with the test results at the time because they had it already in their minds that they "must" get a pump.  Thing is, when you have the test, YOU will be the one who'll know if it works.  If you find yourself like me where I had 4 wonderful hours where the pain went away, then the pump will probably work, but there are some people who stretch the truth with the doctor during the test and say they're happy with the ease up in pain, just because they really wanted it so bad in the first place.
 
Second thing, people go into a morphine pump with the attitude it's going to fix ALL their pain problems.  Sorry, but this just isn't the case.  It will ease up your pain considerably, and even more it will moderate you pain out better, but I doubt if it can ever totally 100% get rid of all the pain, hence the reason why most of us are on supplimental oral narcotics at the same time.  Don't look at a pump as being all or nothing, but instead look at it as being part of your pain management.  Even with all the oral meds I'm on plus the pump I still have times each and every day when I really hurt bad, but I do promise you, in my situation it has eased up my suffering so much better than anything else.
 
Is there risk with a pump?  Of course there is, but of course there's risk with walking from the store to your car, but we live with it.  Nothing is perfect, but now that I'm on my second pump (battery died after 5 years with my first one), I know what it's like when I don't have it, and I was in misery.  Please don't be so fearful, but also don't ask the moon out of just one solution.  Listen to the people who really know what they're talking about such as your pain doctor because they'll tell you the real risks and then you can decide for yourself if you can live with it.  As far as I was concerned, I couldn't live with the pain I was in before, and even with the 50% reduction, it's so much better, I'm thankful each and every single day.  There is no silver bullet, so we've just got to stop asking for it, but there are really expensive but decent solutions that can make life a whole lot more liveable I assure you.  Take care, Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time. In 2004 I got an Intrathecal morphine pump &5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time. 1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.  A year ago my left leg was ampuated above the knee after ging septic.  Guess that about say's it all.  Bob.


BobinmidMO
Regular Member


Date Joined Mar 2010
Total Posts : 39
   Posted 4/4/2010 3:42 PM (GMT -7)   
Hi,
 
Pumps work the best with those in chronic pain.  If your pain comes and goes, then I can't come up with a reason why I'd go through all the problems associated with having one.  If you do live with a constant grind of pain 7/24, then a pump is the only way to go, but first find a doctor you can really trust.  These are not just a simple cell phone implanted in your body.  It's high tech, and it requires service and care so you really need to work with someone who really knows his stuff.  After you find the right doctor, listen, learn and then figure out if it's right for you.  Morphine pumps don't make all the pain go away, but they do make it so a person can deal with it a whole lot easier.  Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time. In 2004 I got an Intrathecal morphine pump &5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time. 1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.  A year ago my left leg was ampuated above the knee after ging septic.  Guess that about say's it all.  Bob.


clown
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/16/2011 5:59 PM (GMT -7)   
Hello, I am interested in getting a pain pump and I would like to know if anyone has had any problems with these or if it has been benefitial to anyone.  I have had chronic pain for approx 10yrs, and fibromyalgia.  I would like to know if it is safe, I am not sure if I should have this procedure done? 

BobinmidMO
Regular Member


Date Joined Mar 2010
Total Posts : 39
   Posted 2/17/2011 12:45 PM (GMT -7)   
After having internal morphine pumps for 8 years now, I'd guess you'd say I've been around for a while. First one lasted 5 1/2 years before the battery finally died so we replaced it out thus I'm now on my second one.

First, morphine pumps are no panacea that miraculously make all the pain go away. Morphine pumps are more about giving a constant dosage of whatever drug the doctor chooses on a regular interval that moderates your middle of the line pain load. Depending on your situation you could still find yourself taking oral narcotics such as OxyContin and OxyIR for breakthrough pain in addition to having the pump.

Second, there's a simple way to find out of your a good candidate for this kind of expensive to install and maintain option (your medical diagnosis and prognosis will greatly determine if you can get your insurance to pay for it in the first place). The doctor will check you into the hospital overnight and then inject morphine directly into your spinal fluid just like the pump eventually will. You'll know on the spot if you're feeling better or if there's no change with your pain. I was so amazed over how the pain eased off I was actually cried it felt so good. 4 hours later the pain returned and I was emotionally crushed. Whatever you do, make sure you're 100% honest with the doctor and the results. I have read where people lied to their doctors during the test claiming the pain had been greatly reduced when in fact it hadn't. They then got the pump installed and then complained the pump wasn't working. Of course it wasn't the pumps fault and the test had shown this fact. It was the patient who was at fault here. You'd never make this mistake, but it's one worth bringing up since others are not always as smart as you are. While it's an option worth consideration, the sad fact is that it's always the doctors and their medical documentation about your health situation that will be the ultimate determining factor as far as you actually getting this high priced piece of technology.

Third, there are some serious consequences that go with having these pumps. First being the install. Mine leaked for the first two weeks at the sight everything was sewn into the spinal column. The first four days I was in hell on earth as my spinal fluid leaked forth. Everything did eventually seal up, but wow were those first days loo-loos. There was also the huge lump on my back about the size of an avocado pit that took over 6 months before finally easing down to around a peach pit sized lump that I still have to this day. It can be very uncomfortable during the first months, and I still find my back getting sore for no reason whatsoever even after all these years. Then there's the hockey puck sized pump that's located in a pocket under your tummy in front - usually to the left of the bellybutton. We're talking about no pacemaker sized device, we're talking about a rather cumbersome round machine that is annoying at best. My second pump slid down south a bit and now resides directly on the belt/waist line which makes pants considerably more uncomfortable to wear depending on the size and style. Since this device is located in a pocket that's created right under the skin, it doesn't matter how much extra or less tummy fat you have - they all are in our way to some degree or another.

Getting them refilled has become easier thanks to modification in design over the years. I use to go in every 8 weeks but now it's more like every 4 1/2 to 5 months thanks to the reservoir holding so much more medication than in older models. Refills are not painful, but they can be uncomfortable.

I went 4 months between my first pump and my second pump due to having almost died after having gone septic, blood clots hitting the lungs plus my amputation that needed tending to first. We also had to get a medi-port and clot buster installed leading into my lungs off the main vein so I really saw what life was like without the pump v/s with it. The differences in managing my pain with my beloved pump astounded even me. When we got the new one turned on (with even a higher dosage than before), I was blown away that these $30,000 machines could make such a huge difference so of course I consider this a lifesaver - but nothing is perfect and there's always good that goes with the bad.

There is no silver bullet that eradicates all pain so don't go out asking for it. There are new difficulties associated with bending over a pump that's always in our way. There's the problems associated with the install and the first months after it's all set up. In the end it all comes down to your relationship between you and your doctor. If you know him very well and you trust him, then I'd do what he says. If there's any doubt whatsoever, then I'd hold off till your 99% sure this is the only option left and only after you've had successful results with the test.

I might not have told you everything you wanted to hear, but I assure you I knew you wanted a straight answer so that's what I've tried to share here. All the best of luck whichever direction you go. Keep me posted. I'd like to know how things turn out. Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time. In 2004 I got an Intrathecal morphine pump &5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time. 1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.  A year ago my left leg was ampuated above the knee after ging septic.  Guess that about say's it all.  Bob.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 2/17/2011 1:43 PM (GMT -7)   
Bob,
You sound very, very knowledgeable about the pumps and tell the whole story. It is a life altering decision to get one and it needs to be considered that way, just as a spinal cord stimulator is.
Both require a commitment from the person having it placed and the doctors caring for them. It is not easy to find a new doctor once you have had one of these devices implanted, no matter which one it is.
Bob is correct, these intrathecal meds must be compounded under the strictest, sterile conditions or they can cause a massive infection that can kill. It is not injectable morphine, fentanyl or other drugs that are used , but specific medications, in specific concentrations, in specific combinations otherwise it can be extremely dangerous and even deadly if not done correctly. The intrathecal meds are compounded specifically for each individual just prior to the appointment to refill.
Anyway, as Bob and Stella and many others have said, it is something to consider if you have tried everything else, and it just isn't working and is something to be considered a part of your overall plan to manage the pain, not the only plan.
Sandi

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 2/17/2011 1:44 PM (GMT -7)   
OMG....reading your post was like reading my own...Everything except the nerve ablation...and the stimulator....How weird is that...anyway, I would love to know more about the pain pump trial...I have been on Methadone 120 mg. and Oxycodone 30 mg. up to 5 a day for years....and it's not working very well....I asked my PM Dr. about a Pain Pump but they don't do them....I am thinking I might like to try one myself....Could you email me and tell me about it? It's on my profile how you can reach me


Rhonda

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/17/2011 3:40 PM (GMT -7)   
Hello Clown, if you started your trial yesterday then you should have been able to tell a difference in your pain immediately.When i had my trial I truly thought I was dreaming there was such a big difference in my pain.

I have not had any of the problems the first person posted about. I do not have a knot in my back and I do not have something sticking out in front either. They do make a pocket in the stomach for the pump , some drs use small mesh bags to set the pump in to help keep it in one spot. I did not have that when mine was put in. I can wear a shirt tucked in and no one can tell I have a pump. I have had it so long I do not even realize it is there. My pump is sort of high up on the right side, its above the waist line. People were wearing pants and jeans too tight and that caused the pumps to flip over. Then the dr has to manually flip is back over in place. That does not sound like fun to me.

There is a pump out made by Codman that runs off of a gas instead of a battery and it does not have to ever be replaced unless the unit stops working. In other words no more surgery to replace a battery like e have to do with the Medtronic pumps. My next one will be a Codman. For the past two years my PM drs has been using the Codman in her patients and so far no failures. I have heard Medtronic is working on a pump like the Codman and that does not surprise me considering they are the leaders in pumps.

I do not have Morphine in my pump, my dr uses a combination of medications and this has worked very well for me. There are many medications out there that can be used effectively in the pumps.

Clown would you mind starting a new post here on yourself as a intro post so that all of the members will see it and give you a proper welcome. You have started out on an old posting here and not many will see it since it is an old posting. All you have to do is click on Post New Topic and then type in something like new person doing a trial with a pain pump.

Anyway, I wanted to pop on and tell you welcome aboard. Keep us posted on how you are coming along with the trial.
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