Pain pump, I have one, how about one for you?

Posted by Stephen @wsh66, Nov 9, 2018

I have had an implanted pain pump in my abdomen for about 18 months. It is a miracle. I get a total of 4.764 mgs. of Dilaudid, If I administer all of the 10 extra micro does I can have in 24 hours. If I don't use those extra doses I get 2.74 mgs. over 24 hours. The effect is 300 times more effective than if I took the same dose orally. I go to my doctors office every 3 months to have the pump refilled. I'm there for about 15 minutes. The actual process of refilling the pump takes no more than 5 minutes and is painless. No prescriptions to worry about, no one wondering if I'm misusing or selling my pain meds, no one making me feel like a drug addict or a criminal. In our current climate this is even more important than it was two years ago. Many Doctors want nothing to do with pain patients or writing scripts for pain meds. I know many of you have been there. This method is especially good for back issues as the drug is delivered via a catheter which runs up my spin. Yes, I still have pain but it's pain I can live with. If your Doctor doesn't know about this or doesn't want to do it contact a pain clinic. The Doctor who put mine in is a Neurosurgeon. If you have any questions please respond.

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@lisakuehl

My husband had a Medtronic pump implanted at Mayo in 2016 for late-stage cancer pain involving pathologically fractured ribs. The medicine they chose for him was morphine. The surgery was terribly hard on him and was to be a simple outpatient procedure, but he spent 4 days in the hospital, unable to recover from the general anesthesia. The morphine gave him little if any relief and finding a practitioner outside of the Mayo network to manage the dosage was nearly impossible. His health declined rapidly after the surgery and he lived for less than two months after that. I deeply regret putting him through that and have nothing positive to say about his experience with the pump. I hope others are having better results. The concept is good, though, but it's not for everyone.

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Lisa, so sorry for your loss. Why did they suggest a pump vs. Oral morphine? I had stage 4 esophageal cancer and used an opiate spray that helped manage the pain. Again, so sorry for your loss.

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@jolenekellner53

I've been offered it for unrelenting pain after two spinal fusions at L4L5 (2nd successful we think). Sounds too good to be true. ANY AND ALL COMMENTS APPRECIATED. Thanks so much.. I'm 65 and pain has taken over my life. Nerve pain not the issue.

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We were told that the pump could deliver more effective medicine in much, much smaller amounts than oral opioids for the same amount of pain relief, with far fewer side effects. For my husband, it was a very bad choice, with no meaningful pain relief benefit and side effects worse than before the surgery. Thank you for your kind words. I am sure pumps help many people, but sadly my husband was not one of them.

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Hi there I'm so glad you posted on the success of your pump. I am pursuing getting one put in. So did you go to the university of Minnesota for it? Any information like where you went and what doctor helped you would be greatly appreciated. I'm so grateful in your success.

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HELLO ERIN, YES I HAVE A PUMP. I AM IN NJ SO IMPLANTED HERE. I HAVE A MEDTRONIC PUMP A WELL KNOWN MEDICAL COMPANY. PERHAPS YOU CAN SEE IF YOU LOOK THEM UP BEFORE YOU MAKE YOUR DECISION, IMPORTANT. THE PUMP IS THE SIZE OF A PACE MAKER IMPLANTED IN THE STOMACH AREA. IT DOES NOT INTERFERE WITH ANYTHING. CATHETER IMPLANTED NEAR THE TALE BONE, CAN'T FEEL IT AT ALL. EVERY MONTH I SEE MY PAIN MANAGEMENT/ANESTHESIOLOGIST. [RESEARCHING A DOCTOR IS VERY IMPORTANT!!!!!!!!!!!!!!!!!!!] EVERY MONTH MY DR. FILLS THE PUMP WITH MEDICATION FOR PAIN AND THAT IS GIVING YOU CAREFUL DOSES 24 HRS A DAY. THAN WHAT YOU WILL BE GIVEN SOMETHING LIKE A REMOTE, SMALL CALLED A BOLUS. THAT IS PROGRAMED FOR ME TO PRESS FOR AN EXTRA DOES IF NEEDED. IN MY CASE IM ALLOWED 7 TIMES A DAY. I ALSO TAKE 4 MG HYDROMORPHONE WISH I USE VERY CAREFULLY! DR. HAS STARTED ME ON NALTREXONE VERY VERY LOW DOSE IN A DROPPER. IT'S HAD TO EXPLAIN PERHAPS YOU CAN RESEARCH IT AND ASK YOUR DR. AS FAR AS THE PUMP GOES NOT A BIG SURGERY, SAME DAY. I HOPE THIS MAY HELP WITH YOUR DECISION.

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I FORGOT TO ASK IF ANYONE HAS "ADHESIVE ARACHNOIDITIS" IT IS A CRONIC DEBILITATING PAIN THAT NEVER STOPS. LUMBAR SPINE. I HAD A SPINAL STENOSIS SO DR. SAID. WHEN HE OPERATED OR REPORT SAID IT WAS WORSE THAN HE EXPECTED SO HE DID A WIDE LAMINECTOMY REMOVING: S-1. L-2. L-3. L-4. L-5. NO FUSION. I WAS UNEDUCATED AT THE TIME. THAT STARTED MY ROAD TO TO ADHESIVE ARACHNOIDITIS SINCE SURGERY 2008, 2015 ANOTHER PROCEDURE, COULD NOT DRIVE ANYMORE. I CAN ONLY LEAVE MY HOME WITH MY HUSBAND. NEUROSURGEONS WHEN BACK SURGERY FAILES CALLS IT "FAILED BACK SURGERY" THIS IS "ONLY" MY EXPERIENCE!!!!!! THERE IS NO RESEARCH FOR PATIENTS LIKE ME. MEDICAL PROFESSIONALS NEVER HEARD OF THIS??? FOR THOSE WHO HAVE THE SAME THERE ARE MANY SITES HERE AND ABROAD TO SPEAK WITH FOR GUIDANCE. IF ANYONE HAS WHAT I DO PLEASE REPLY. THANK YOU.

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@erinzz15

Hi there I'm so glad you posted on the success of your pump. I am pursuing getting one put in. So did you go to the university of Minnesota for it? Any information like where you went and what doctor helped you would be greatly appreciated. I'm so grateful in your success.

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U of M, Dr. Park. You have jump some hoops before you get the pump. However It's a great learning experience, the intake process

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@kimspr3

I FORGOT TO ASK IF ANYONE HAS "ADHESIVE ARACHNOIDITIS" IT IS A CRONIC DEBILITATING PAIN THAT NEVER STOPS. LUMBAR SPINE. I HAD A SPINAL STENOSIS SO DR. SAID. WHEN HE OPERATED OR REPORT SAID IT WAS WORSE THAN HE EXPECTED SO HE DID A WIDE LAMINECTOMY REMOVING: S-1. L-2. L-3. L-4. L-5. NO FUSION. I WAS UNEDUCATED AT THE TIME. THAT STARTED MY ROAD TO TO ADHESIVE ARACHNOIDITIS SINCE SURGERY 2008, 2015 ANOTHER PROCEDURE, COULD NOT DRIVE ANYMORE. I CAN ONLY LEAVE MY HOME WITH MY HUSBAND. NEUROSURGEONS WHEN BACK SURGERY FAILES CALLS IT "FAILED BACK SURGERY" THIS IS "ONLY" MY EXPERIENCE!!!!!! THERE IS NO RESEARCH FOR PATIENTS LIKE ME. MEDICAL PROFESSIONALS NEVER HEARD OF THIS??? FOR THOSE WHO HAVE THE SAME THERE ARE MANY SITES HERE AND ABROAD TO SPEAK WITH FOR GUIDANCE. IF ANYONE HAS WHAT I DO PLEASE REPLY. THANK YOU.

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@kimspr3
Normally arachnoiditis is a condition caused by surgeries, injections, etc., a side affect I guess. I'm surprised that none of your doctors mentioned that to you. Do you mean you are unable to find anything that explains your condition or that doctors are not educated about it? I know arachnoiditis is rare and so are Tarlov cysts (perineural cysts) which is what I have. Don't give up. There has to be some doctors that specialize in your condition. I found only 3 neurosurgeons that specialize in my cysts. I live in Wisconsin and had to travel all the way to Dallas, TX. The worst thing you can do is settle for just being a chronic pain patient and thrown into pain management. Keep pushing and asking questions!!! Best of luck to you!

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Thanks for your support. I’ve never heard of the arachnoiditis so I have no idea what it is. I will look it up. I’ve recently had several biopsies taken from my ankle kne and hips on each side so determine if and how well my nerve activity is doing. When I see my pain Mgmt Dr monthly , I’m always asking about new therapies, treatments etc. I’m not giving up, though in the past I’ve become depressed as I was once a very active person, now I look forward to sitting in my recliner with my feet elevated as that seems to be the only way that I can get any relief. Other than from meds, which aren’t alwYs that effective.

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@mlross4508

Thanks for your support. I’ve never heard of the arachnoiditis so I have no idea what it is. I will look it up. I’ve recently had several biopsies taken from my ankle kne and hips on each side so determine if and how well my nerve activity is doing. When I see my pain Mgmt Dr monthly , I’m always asking about new therapies, treatments etc. I’m not giving up, though in the past I’ve become depressed as I was once a very active person, now I look forward to sitting in my recliner with my feet elevated as that seems to be the only way that I can get any relief. Other than from meds, which aren’t alwYs that effective.

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You should ask about Lyrica, (and Gabapentin), and amitriptyline for bone pain or nerve pain Narcotics can only do so much and large doses make you numb, not high but numb.

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@mlross4508

Thanks for your support. I’ve never heard of the arachnoiditis so I have no idea what it is. I will look it up. I’ve recently had several biopsies taken from my ankle kne and hips on each side so determine if and how well my nerve activity is doing. When I see my pain Mgmt Dr monthly , I’m always asking about new therapies, treatments etc. I’m not giving up, though in the past I’ve become depressed as I was once a very active person, now I look forward to sitting in my recliner with my feet elevated as that seems to be the only way that I can get any relief. Other than from meds, which aren’t alwYs that effective.

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@mlross4508
I hear you on the recliner!! I've owned a restaurant for 19 years and had to just close it down several years ago because I can't be there to run it. I'm used to working 6 or 7 days per week and was busy doing something all the time. Now about all I can do is go from the couch to the bathroom and back. It's so painful to sit, stand, walk, etc. - everything! I only leave the house when I go to a doctor's appt. I don't have arachnoiditis but I do have multiple Tarlov cysts on my spinal cord that are pushing on the cauda equina nerves in the sacral area causing everything from my lower back and to my toes to malfunction. I also have a tethered cord which is like a nerve at the end of your spinal cord that gets pulled tight and doesn't release. All of this is just from a slip & fall!! You are not alone in the daily struggle. The best thing to do is to get your phone and laptop with you on the recliner and start researching and advocating for yourself to find someone that specializes in your condition. You may have to go through a dozen different doctors until you find the right one. Keep asking questions and push for answers. Also, I was made to go talk to a mental health person because my doctor said anyone with a chronic condition is depressed. I am depressed but only because of the pain and not being able to do anything. I found that it's nice to just get things off your chest and talk to an unbiased person. Best of luck to you and try to hang in there!

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