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Old 05-25-2007, 10:40 AM   #1
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Join Date: May 2007
Location: Tompkinsville Kentucky, USA
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WakeUpDead HB User
Anyone have the pain pump, and how high is it?

I have a Medtronic Pain Pump that gives me morphine right into my spinal fluid. I am at level 8.2mg/day and my pain levels are beginning to go off the chart. I had some relief over 2005-2006, about 5-6 on the pain scale, but the last 6-8 months my pain levels have jumped to 8-9. I canít function day to day and I am in bed 16-18hrs each day.

My pain management doctor wonít give me anything on top of the pump(for breakthrough pain) and wonít turn it up to a higher level. He says "itís at his limit" and that "taking other meds will only make the pump work less", great.

Does anyone have a pain pump? If so what are the meds., how much meds., are you taking other meds with the pump too and have you been told a top level that you would have to stop at?

Iím very upset at this point, the whole reason I got the pump was due to the high amounts of patches and oral meds I was taking daily, however I felt better then Iím feeling now. I had a good first year and a half but now I feel I should go back to oral meds. My doctor even said to go to another pain doctor(second opinion) and see if they would turn it up higher or give me more meds or oral meds. Is he just washing his hands of me, he really wants me to go somewhere else? He has said many times that he can only turn it off and let me go without any meds for 3-6 months. He says to have my body reset. What, no meds at all, no no, I cant do that.

I canít imagine having no meds at all, after 9 years on meds. That just sounds crazy! I have to function at some level, I have 4 kids and I canít be curled into a ball on the bed 24/7 for 6 months. Iím almost close to that now but man would that throw me over the edge. I donít know what others are being told by there doctors but Medtronic, the makers of my pump, wont comment on medication amounts.

I am awaiting SSD to kick in after 5 years of fighting. I finally won my hearing on 4/11/07 and the ALJ (Judge) said I will get it, but it could be another 3-6 months before I see any insurance or money from it (SSI is soooooo slow). Therefore I canít be going to any new doctor, I have no insurance or money to pay. I pay my doctor now, out of pocket and he has lowered the cost to me, but what doctor, not knowing me, will do that? Iím really stuck here; I donít know what to do? I tried talking with my family doctor to see if I get the pump out or off, if he would write my scripts for patches and oral meds again, like he did prior to my pain doctor, till I get SSD. I told him why I want to leave my pain doctor, but he wonít do that. He thinks Iím better off waiting, doing what I am, compared to starting on oral and patches again.

So Iím just stuck in the mud for another 6 months waiting for some sort of pain relief, if I can even find a pain doctor that will help me out? Iím just sick with anger and pain! Iíve been dealing with pain for 9+ years and have never had much relief, well more then no relief!

I think he's a little anal about the meds in my pump, its not like I can give myself more or that I've given him any reason to not to increase my levels or to trust me. I alway do what he says and never have done anything to upset him.

Any info that you pump owners have would be great, Im trying to find out if my doctor is just very conservitive or if he's in line with other doctors.

Thanks guys!

Nice forum here! I wish I would've found this place years ago!

 
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Old 05-25-2007, 10:26 PM   #2
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Join Date: Aug 2005
Location: USA
Posts: 462
conductor HB User
Re: Anyone have the pain pump, and how high is it?

Dear WakeUp,

I will be upfront by telling you that I do NOT have a pain pump in me. However, I have read an excessive amount of posts of those who DO have these devices implanted in them. As well, I'm aware that other opiates--such as Dilaudid and Fentanyl--are available. I'm reasonably sure that the two I listed are more potent than morphine. SO, I'M NOT SURE WHY YOUR DOCTOR HAS REACHED "HIS LIMIT". Maybe he is scared of DEA intervention. It seems like he should give you a reasonable explanation.

Concerning the DISABILITY issue...Do you mind telling us what your ailment is? When I applied (because I have Lupus and the Lupus Anticoagulant), I began receiving money within 4 or 5 months! HOWEVER, I had approximately 10 years of medical records (a truly ridiculously thick amount of documentation)!!!!! I had practically every test known to man (and woman) in my file. Plus, I had seen Neurologists, Internists, a Rheumatologist, at least 2 Pain Doctors, and several other specialists. I HAD EVERY POSSIBLE BASE COVERED. So, it didn't take them (whoever "they" are) to review my file and see that I was--without a doubt--disabled. The best thing my current doctor had me do was a PROACTIVE evaluation. She sent me to a Physical Medicine doctor referred to as a Physiatrist--not to be confused with a Psychiatrist. I know you thought this would never end, but it's getting close. I did NOT...NOT...NOT use an attorney. I used someone trained in handling DISABILITY issues. In fact, I looked in the Yellow Pages and found someone under the heading of "Disability Associates" (or something really close to that). I NEVER went in front of any sort of judge. These people did the work. Of course, they got a "cut" of my initial payment, but it was worth it! Admittedly, I had the responsibility of providing the medical records they needed. Other than that, they did all of the work!

I got way off the main topic, but I felt you should be aware my timeline. If you don't mind, it would probably be a good idea for you to tell us your diagnosis.

Sincerely,
Jon (Conductor)

 
Old 05-26-2007, 11:53 AM   #3
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Join Date: Apr 2004
Posts: 140
geifer HB User
Re: Anyone have the pain pump, and how high is it?

I am on my third pump first one in 1997 second in 2001 and the third this past Aug ( the tube disconnected from the pump ) after I was getting little if no relief. I have been up to 10 on my pump but now that I have one that is working the right way I am on 2.499 a day now. I do take neurotin and vicodine at night so I can get a good night sleep. I was taking three vicodine a day for break thru pain but now with the new pump I only take one at night. I work really well with the doctors at my pain clinic and they really listen to what I say about when my pain is good and when I need something a little more in the evening. They also have ( on my second pump ) they have increased the doesage in the evening at 6pm until 6am for a little extra help. I hope this helps if you are not getting relief have them check for a disconnected tube or if the flow is coming out the way it is designed to. My tube came dissconnected and they did not catch it until I had my third pump put in and when he cut me open it was like a little sprinker going off. I hope this helps work with the doctors to see if they can help you solve your problem it is no fun hurting all the time when there is something they can do to help you Good luck take care and stay safe geifer

 
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