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.

@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.

Liked by qball2019

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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.

Liked by qball2019

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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!

Liked by shadow33

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@wsh66

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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Another thing to ask your pain management or integrative pain specialist to try is ketamine troches and oxytocin troches. They desolve under your tongue. They work together but you can also take them separately. I find that they work best together. You take the oxytocin and then wait 30 min. before taking the ketamine. Unfortunately, they don't work in pill form because the oxytocin cannot survive stomach acid. It's also an opioid alternative but is still a controlled substance. It is very effective and is actually the best pain relief I've had in many years! I am currently considering a ketamine infusion. Hope this might help someone!

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@wsh66

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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Ok perfect, getting a referral there. Wanted to know the doctor you used. Is he strict or does he kind of let you give your opinion on what you think would work. The doctor I saw here said it only works if you get off all opiods for months prior to the trial. There is no way in hell. I have a spinal cord stimulator so I'm sure it's kind of the same hoops right. Me talking eval, trial ect. If you dont mind how did they do your trial, did they make you quit your pain meds prior and were you hospitalized for the trial or just given the injection to see how much it helped. The guy here was just going to inject morphine in my intrathecal space and I would just sit there 3 hours. Does that doctor also take care of your oral medications?

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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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I havent heard of that disorder so it must be kind of rare because I was a neuro spine nurse and I research all the time and am in nurse practitioner school and we just covered the nervous system. I'm so sorry to hear about your suffering, I too am under the label "failed back surgery". Who the heck that had had their spine touched isn't under that umbrella? Haha sad face :/

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@kimspr3

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 WENT TO HOLY NAME IN HACKENSACK, NJ. FROM WHAT I HEAR UNIVERSITY OF MINN. IS A GOOD HOSPITAL BUT DO RESEARCH ON YOUR DR AND FIND OUT HOW MANY PUMP IMPLANTS HAS DR. DONE. GOOD LUCK.

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@erinzz15

Ok perfect, getting a referral there. Wanted to know the doctor you used. Is he strict or does he kind of let you give your opinion on what you think would work. The doctor I saw here said it only works if you get off all opiods for months prior to the trial. There is no way in hell. I have a spinal cord stimulator so I'm sure it's kind of the same hoops right. Me talking eval, trial ect. If you dont mind how did they do your trial, did they make you quit your pain meds prior and were you hospitalized for the trial or just given the injection to see how much it helped. The guy here was just going to inject morphine in my intrathecal space and I would just sit there 3 hours. Does that doctor also take care of your oral medications?

Jump to this post

I don't remember the entire process but I believe I saw a neuropsychologist or neuro psychiatrist as one of the first steps. No they did not make me stop taking medications prior to the trial. This all took place in 2016 before the opioid Hysteria grabbed a hold of the medical community. Yes doctor Park manages my oral medications which are minimal to say the least and our continued at least in my case as a perceived placebo. Whatever the process was I didn't find it overly evasive or too time consuming. You start by getting an appointment at the pain clinic, it might help to let them know you're not looking for a doctor to prescribe opioids that you're interested solely in the pain pump and or stimulator.

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@qball2019

@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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HELLO, THANK YOU SO MUCH!! ADHESIVE ARACHNOIDITIS IS ALSO CALLED A.A. EAISER TO WRITE. IT IS CAUSED BY SPINE SURGEONS, NEUROSURGEONS, TEARING OF THE DURA, EPIDURAL'S, AND MORE. THEIR DIAGNOSIS TO THEIR PATIENTS, FAILED BACK SURGERY. IT STARTED IN 2008. I WAS NIEVE, UNEDUCATED, NO RESEARCH BEFORE MY LAMINECTOMY. HE CLAIMED I HAD SPINAL STENOSIS! I LATER FOUND OUT WITH SPINAL STENOSIS SITTING DOWN HELPS. IT THAT NEVER HELPED ME! I DID NOT ASK WHY. HE REMOVED, S-1 L-2 L-3 L-4 L-5 NO FUSION. FOR PATIENTS PRYER TO SURGERY YOU ARE SUPPOSED TO SEE THE SURGEON IN THE HOLDING AREA, NOT ALL BUT MOST IN THE OR, RECOVERY. I DID NOT. EVERY TIME I HAD A PROCEDURE I BECAME WORSE. TO MAKE IT SHORT. LUMBAR SPINE, SCAR TISSUE IS STUCK AROUND THE NERVES WHICH CAUSES DEBILITATING PAIN. MY HANDS, LEGS, ARE JUMP AT TIMES FROM NERVES. SITTING, STANDING, BENDING ETC IS PAINFUL. DON'T DRIVE ANYMORE. LIFE AS I NEW IT IS GONE. I HAVE TRIED TO GO TO THE SENATE, CONGRESS, TO PASS A BILL THAT PATIENTS MUST BE TOLD POSSIBILITIES. I AM NOT SAYING IT WILL HAPPENED TO EVERYONE AT ALL. INFORMATION ABOUT A.A. IS ON THE INTERNET HERE AND IN EUROPE. MAY I SUGGEST BEFORE SURGERY BRING UP ADHESIVE ARACHNOIDITIS. LET THE MANY ARROGANT NEUROSURGEONS KNOW THAT YOU ARE AWARE OF A.A. THEY "DO" KNOW WHAT IS IS! I HAVE A WONDERFUL PAIN MANAGEMENT/ ANESTHESIOLOGIST. STARTED ME ON SOMETHING NEW FOR PAIN I JUST STARTED. MY SITUATION IS VERY COMPLEXED. MY SPINE CAN NOT BE TOUCH ANYMORE WHICH I WOULD NEVER DO ANYWAY. ALL IM SAY IS TO DO YOUR HOMEWORK, ASK QUESTIONS. I DID NOT.

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@qball2019

@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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I HAD TO RESEARCH ON MY OWN. NOT ONE DR. TOLD ME THEY HEARD OF IT! I SPEAKING NEUROSURGEONS, SURGEONS.

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@wsh66

I don't remember the entire process but I believe I saw a neuropsychologist or neuro psychiatrist as one of the first steps. No they did not make me stop taking medications prior to the trial. This all took place in 2016 before the opioid Hysteria grabbed a hold of the medical community. Yes doctor Park manages my oral medications which are minimal to say the least and our continued at least in my case as a perceived placebo. Whatever the process was I didn't find it overly evasive or too time consuming. You start by getting an appointment at the pain clinic, it might help to let them know you're not looking for a doctor to prescribe opioids that you're interested solely in the pain pump and or stimulator.

Jump to this post

Ok sounds great thank you for the tip, have a great day!!

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@kimspr3

I WENT TO HOLY NAME IN HACKENSACK, NJ. FROM WHAT I HEAR UNIVERSITY OF MINN. IS A GOOD HOSPITAL BUT DO RESEARCH ON YOUR DR AND FIND OUT HOW MANY PUMP IMPLANTS HAS DR. DONE. GOOD LUCK.

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Ok sounds good, thank you so much!!

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@kimspr3

HELLO, THANK YOU SO MUCH!! ADHESIVE ARACHNOIDITIS IS ALSO CALLED A.A. EAISER TO WRITE. IT IS CAUSED BY SPINE SURGEONS, NEUROSURGEONS, TEARING OF THE DURA, EPIDURAL'S, AND MORE. THEIR DIAGNOSIS TO THEIR PATIENTS, FAILED BACK SURGERY. IT STARTED IN 2008. I WAS NIEVE, UNEDUCATED, NO RESEARCH BEFORE MY LAMINECTOMY. HE CLAIMED I HAD SPINAL STENOSIS! I LATER FOUND OUT WITH SPINAL STENOSIS SITTING DOWN HELPS. IT THAT NEVER HELPED ME! I DID NOT ASK WHY. HE REMOVED, S-1 L-2 L-3 L-4 L-5 NO FUSION. FOR PATIENTS PRYER TO SURGERY YOU ARE SUPPOSED TO SEE THE SURGEON IN THE HOLDING AREA, NOT ALL BUT MOST IN THE OR, RECOVERY. I DID NOT. EVERY TIME I HAD A PROCEDURE I BECAME WORSE. TO MAKE IT SHORT. LUMBAR SPINE, SCAR TISSUE IS STUCK AROUND THE NERVES WHICH CAUSES DEBILITATING PAIN. MY HANDS, LEGS, ARE JUMP AT TIMES FROM NERVES. SITTING, STANDING, BENDING ETC IS PAINFUL. DON'T DRIVE ANYMORE. LIFE AS I NEW IT IS GONE. I HAVE TRIED TO GO TO THE SENATE, CONGRESS, TO PASS A BILL THAT PATIENTS MUST BE TOLD POSSIBILITIES. I AM NOT SAYING IT WILL HAPPENED TO EVERYONE AT ALL. INFORMATION ABOUT A.A. IS ON THE INTERNET HERE AND IN EUROPE. MAY I SUGGEST BEFORE SURGERY BRING UP ADHESIVE ARACHNOIDITIS. LET THE MANY ARROGANT NEUROSURGEONS KNOW THAT YOU ARE AWARE OF A.A. THEY "DO" KNOW WHAT IS IS! I HAVE A WONDERFUL PAIN MANAGEMENT/ ANESTHESIOLOGIST. STARTED ME ON SOMETHING NEW FOR PAIN I JUST STARTED. MY SITUATION IS VERY COMPLEXED. MY SPINE CAN NOT BE TOUCH ANYMORE WHICH I WOULD NEVER DO ANYWAY. ALL IM SAY IS TO DO YOUR HOMEWORK, ASK QUESTIONS. I DID NOT.

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Hello @kimspr3 – I thought you may also be interested in a conversation with other members on adhesive arachnoiditis, https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/

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OH, THANK YOU YES!!!!!

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