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Stephen
@wsh66

Posts: 244
Joined: Jan 31, 2018

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

Posted by @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.

REPLY

Wow…The only thing I can suggest is that you go to a more experienced region like the north east or the northwest or the south west, or a Mayo clinic. Obviously you were not getting good health care where you were at. Sometimes there can be a cronyism the main doctors that makes it very hard to get the care you need for the mistakes that have been made. Wishing you the best.

@jelizabeth

I apologize for the length of my post, but I have had a lot of problems after having a L5-S1 laminectomy, in 2012. I still don't know everything that the doctor did wrong, but he put a screw in the nerve root and moved it to another place during surgery. I felt like someone had put a golf ball coated in broken glass and left it in in my rectum. Every movement exacerbated the pain, but doctors in my area acted like I had the plague. I went to Baylor in TX, because an ER nurse at the local hospital said they had good neurosurgeons. I saw Dr. Daniel Kim, who looked at the MRI disc and said I had the "wrong kind" of surgery. He left the room and did not return. The physician assistant came in to tell me I needed to have an EMG test and spinal cord stimulator trial. I left and did not return. I went to Vanderbilt, which was a waste of time. I went to Mayo in FL, which is where I learned about the screw being put in the nerve root. Another screw was close to the S1 nerve, but the neurosurgeon would not remove it. They set me up with a neurologist, but the appointment was six months away, even though I live eight hours away. I went to other neurologists, which was a waste of time. I had been sent to pain management, by my primary care doctor. The opioid medication made it possible for me to barely function, but I still had a lot of uncontrolled pain. I went there until the facility stopped prescribing pain medication, to any of the patients, and started giving injections, only. A neurosurgeon told me I needed a tethered cord surgery before he could do an ALIF surgery to stabilize my spine. I did not believe him, because he would not answer my questions, but my family (and I) were afraid no one else would operate. (I had been to four or five neurosurgeons that did not want anything to do with me). After the surgeries I was no better. My pelvis tilted because of the surgeries and I had to have hip replacement. It was done incorrectly, but again no one wanted to help. It took two years to find a doctor that told me the truth, which was that the implant had been put in too steep. By this time, I was having to sleep in a recliner, because my hip would slide out of place, in bed, and I would wake up in so much pain that I could hardly get out of bed, which was necessary for me to work my hip around so it would stop hurting. The ortho. surgeon did a revision surgery and fixed my hip. I had been going to Comprehensive Pain Specialists, in Oak Ridge, TN for pain mgmt. The doctor did a trial injection, at L5-S1 I think, for a pain pump. He used Fentanyl, which took away all my pain, within minutes. I was sent to a surgeon to discuss pump implantation, but he acted really strange and said the pump would show through my clothing (like I cared). I went back to the pain facility, where the doctor acted strange and started talking about a spinal cord stimulator, for some unknown reason. Within a month he was gone and by the way everyone was acting, he had gotten fired. (I recently learned that he paralyzed two women, while doing some procedure). I was told to go to another CPS location, in Knoxville, if I wanted a pain pump. I went and was not able to see the doctor. The nurse practitioner was hateful and acted like I had done something wrong, but I was taking my medication as prescribed and had passed all the drug tests. It was strange that the other location, in Oak Ridge, had done urine drug screens almost every month, but the one in Knoxville did not do any. I finally asked for my records, but they were not sent. I was told that I had to get them from the corporate office in Gallatin, TN. It took them almost three months to send the records. I knew something had to be going on, by this time. Sure enough the nurse practitioner had put in the records that I was short of pills one month. (An unidentified person always counted the pills across the room. I knew I had the right amount and assumed that they agreed since they did not say anything). There were statements making me sound like a complete moron and drug seeker. I think this was because a doctor that is a friend of the first back surgeon had started working at CPS. (The records from the first pain management facility were honest and had nothing bad). The nurse practitioner kept telling me that she was doing everything possible to make my insurance company approve the pain pump. I called them and learned that she had not even sent my paperwork, or a request, for a pain pump. All the CPS offices are now closed in TN and there are lawsuits against the CEO. Thankfully my PCP sent me to a new pain management doctor, but they would not increase my medication. They did a myelogram that showed clumping of nerve roots. I had asked for this test after the L5-S1 surgery, but I had gone to the back surgeon's friend that went to CPS (I live in a small town with unethical doctors) and I was told that it would be dangerous for me to have the test. He did not want me to find out that I had lacerated nerves. I was not referred back to the interventional pain doctor that had ordered the myelogram, but to a nurse practitioner. He was extremely nice and went over the myelogram, but he did not tell me that clumping meant arachnoiditis. I had severe stenosis at L3-L4 and he wanted to send me to another neurosurgeon in the group. He said this one operated on people with previous surgeries. In order for me to be able to see the neurosurgeon, I had to sign a release for them to have the records from CPS. I should not have done this, because the nice NP returned to his former job and I was treated like complete crap after they saw the records. There were a few places that the lies contradicted themselves, such as when the NP had said she told "them and they" that "they" were short of pills, but after I had read the records and confronted the nurse practitioner, she documented that she went back and looked at the office visit and "the husband was not with her". My husband always went with me and this was clear because she had originally documented that she told "they and them". I pointed the errors out to the doctor and he said he had never seen anything like it before. I made sure that he noticed that they had not done any drug screens, during the year that I had gone to the CPS location, in Knoxville. This would never happen under normal circumstances at a pain mgmt. clinic in TN. The doctor still treated me terribly, although he knew I was telling the truth. I went to Emory and saw a neurosurgeon about having surgery for L3-L4 stenosis. He said he would put in a SCS at the same time of surgery, when I made an extra trip to ask more questions about the rectal pain that is still so bad. I do not want a SCS, because my first pain mgmt. doctor told me a pain pump would be a better option for someone with nerve root clumping, however, it is difficult to find someone near my home that maintains them. I went to Charlotte, to see a neurosurgeon, but I had to delay surgery after riding an exercise bicycle and inflaming the sacral nerve roots. The neurosurgeon told me that I had not had a tethered cord, meaning the surgery was bogus. The pain mgmt. nurse practitioner put comments in my records, making it sound like I was trying to avoid surgery to take pain pills. This was not true. The surgery was for stenosis and was not supposed to help the rectal pain. The nice nurse practitioner had changed my medication from oxycodone to fifty microgram fentanyl patches and they had never worked as well as the oxycodone. The neurosurgeon at Carolina Neurosurgery and a pain management doctor that I saw in Charlotte (just to see what he would say—it is a four hour drive from my house to Charlotte) said I should ask for something for breakthrough pain. I mentioned this to the NP, but she said she did not prescribe both short and long acting medications at the same time, which was a lie. She suggested that I take morphine and said it might work better. Although she said she would write a prescription for the same morphine equivalents, she wrote the prescription for ninety morphine equivalents, which was thirty milligrams less than what I was taking. She had not given the script to me, as she had done in the past, she gave it to the lady at the check out desk. She had sent me to wait in another office that was setting up a new MRI. When I got the order, which was for a MRI of my pelvis, it was without contrast. My previous imaging had been done with and without contrast. This was especially weird because she had ordered a cervical MRI with and without contrast. It seemed that she did not want any problems with my sacral nerves to show up. My older imaging reports said there is abnormal edema and atrophy in the sacral ala, and that this could mean denervation or a muscle tear. It is denervation, because I have severe atrophy and weakness in my lower extremities (something that the many doctors I have seen always want to overlook and not talk about). I did not have the MRI, after I saw that she had lowered my dose of medication. The Walgreens pharmacy that I use did not stock the type of morphine (Arymo) that the NP had wrote the script for. I took the script to a pharmacy near the pain mgmt. facility. The pharmacist said it was dangerous to lower my dose that much, after I told him what my problems were and how much pain I have. He offered to call the NP, which was concerning, but I said OK. The phone nurse called and let me have it. She said the pharmacist was not the pain management doctor. I was really scared and asked my PCP to send me to another pain management doctor. There was another reason for me to be scared. I had gotten a ganglion impar injection by the pain mgmt. doctor and it had caused my pain to worsen. I had called the doctor, but was told that he was on vacation and I would have to go to the ER, in a very hateful threatening tone. I went and was given a dilaudid injection and steroids. I was afraid they could dismiss me because of the dilaudid injection. Fortunately, I received a call from the new pain management office and did not have to send records from this place. The new doctor spent over two hours with me and said he did not know who had been prescribing my pain medication, but they must not have read my records. He doubled my pain medication. (My pain had gotten so bad that I could not do anything and I was crying all the time). I went back to Carolina Neurosurgery, but the neurosurgeon was on a three week vacation. I was told that I could suffer motor nerve loss and have worse bowel and bladder problems if I waited that long to have surgery, and that they would have someone else do the surgery. I only saw the new neurosurgeon for a few minutes, lying on a stretcher in the hospital, but he disagreed with his colleague and said it was possible for the surgery to help the rectal pain. I had the surgery and it miraculously got rid of the rectal pain. It caused my right leg to be weaker and the symptoms of drop foot to be worse, however, and I fell three weeks after the surgery was done, after my toes drug on the floor. By the next day the rectal pain was back. The neurosurgeon told me that he did not know why the pain was gone, which was a complete turnaround from what he had first said. I figured it had something to do with scarred nerves from the first back surgery and he did not want to discuss this. A neurologist told me that something had to fall on a nerve for the pain to return. He was going to order a pelvic MRI with protocols to show the nerves, but my insurance company wanted X Rays first. I had them done, but have not heard anything back from the neurologist. I had another trial injection for a pain pump by the new doctor. He used hydromorphone, but he did the injection at L3-4. It did not help, even though the nurse said the medication would gravitate down to the L5-S1 nerves. I had a consultation with a new neurosurgeon because I wanted to ask about arachnoiditis and cauda equina syndrome. I had read in the records from Carolina that I have progressive chronic cauda equina syndrome, and the neurosurgeon had said that nerve root clumping meant arachnoiditis, at the last appointment. The new neurosurgeon said that because of the arachnoiditis the medication would not gravitate down, which was why the trial did not work. He also said that the tethered cord surgery caused the arachnoiditis. I am having another trial next week and the doctor is going to use fentanyl, because I told them about the first trial. If he does it at the same place it will not work. I think he may have said he did not want to do it at L5-S1 because of the nerves, but the rep was saying something and I did not hear everything the doctor said. I will be so upset if he doesn't do the trial at L5-S1. I have read an article about opioid intolerance and I am afraid this could be why my pain medication is not working. I fell again on concrete and landed hard on my pelvis. The pain medication stopped controlling the rectal pain after the fall. The area constantly aches and burns. I use jar after jar of biofreeze cream, because of the menthol effect, but it doesn't stop the pain. I am very frightened for my future. Have you heard of anyone else that has rectal pain from nerve injury at L5-S1?

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@jelizabeth
Good Morning!
I am so sorry for all you have been through! I cannot imagine the physical and psychological pain you have suffered. I know you have no choice but to find and answer, but you are a very strong person to have endured all this.
I haven't had your issues but I just wanted you to know that I care.
Ronnie (GRANDMAr)

@grandmar

@jelizabeth
Good Morning!
I am so sorry for all you have been through! I cannot imagine the physical and psychological pain you have suffered. I know you have no choice but to find and answer, but you are a very strong person to have endured all this.
I haven't had your issues but I just wanted you to know that I care.
Ronnie (GRANDMAr)

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Thank you so much. I appreciate your kindness.

@ckeys

Wow…The only thing I can suggest is that you go to a more experienced region like the north east or the northwest or the south west, or a Mayo clinic. Obviously you were not getting good health care where you were at. Sometimes there can be a cronyism the main doctors that makes it very hard to get the care you need for the mistakes that have been made. Wishing you the best.

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For sure. Thank you so much.

@grandmar

@jelizabeth
Good Morning!
I am so sorry for all you have been through! I cannot imagine the physical and psychological pain you have suffered. I know you have no choice but to find and answer, but you are a very strong person to have endured all this.
I haven't had your issues but I just wanted you to know that I care.
Ronnie (GRANDMAr)

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Thanks for your concerns. I have only been through what life has to offer.Good things, bad things, we survive them all. Yes, life can bring some awful things but despite all it deals you, it's still a wonderful thing to be alive and to experience love.

Can a pain pump help any type of pain, or is it limited to certain areas of the body? I use moral dilaudid now for intractable lower leg pain that is caused by activity and is related to a lot of nerve compressions/entrapments. If it continues after I heal from my recent nerve decompression surgery, I want to do the pain pump next and have that option available.

I'll ask my Doc when I see him Dec. 3rd but I know what he will say. "If dilaudid helps now it will help even more delivered by the pump". How much do you take now? Yes it does help the whole body but it is not 100%, it's just way better than oral without the side effects.

This was just suggested to me by my new pain management doctor. The thought of not having to swallow pills thrills me. How difficult was the implantation itself, as this is coming after two FUSIONS?

@jolenekellner53

This was just suggested to me by my new pain management doctor. The thought of not having to swallow pills thrills me. How difficult was the implantation itself, as this is coming after two FUSIONS?

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I have one, it's great. Search this site under me, wsh66. I've had a lot to say about the benefits of the pump. For me it's the end game.

Wow! You make me want a pain pump. It was mentioned to me years ago but I was afraid to have one put in. My doctors keep thinking about offering me a spinal cord stimulator. Do you know anything about the pros & cons of each?

@qball2019

Wow! You make me want a pain pump. It was mentioned to me years ago but I was afraid to have one put in. My doctors keep thinking about offering me a spinal cord stimulator. Do you know anything about the pros & cons of each?

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Why yes, yes I do the pain pump works and as far as I know the electrical stimulator does not at least for me.

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