How am I doing with the pain pump?

success

I am in a Face Book group for PNE sufferers — (Pudendal Neuralgia PNE Surgery) — and I responded to some questions with a very long explanation, which I decided to post here on my blog. It describes my life today with the pump, after a year and four months of living with it. It has become a part of me. I joke that I am a “bionic woman” and it feels true because I am different. The times I really enjoy are when I forget the pump is even there, and I feel like a “normal person,” if there is such a thing! I want to do as many things as I can. Because of the pump I have been able to visit my son and walk around the campus where he studies and works. I have enjoyed trips to the coast with my husband, swimming in a pool, slow dancing. I have been to restaurants where I’ve had foods I avoided for years because of my IC. Life has opened up, and while I’m limited, and sometimes discouraged, it is a far cry from the misery I lived with before.

Were you concerned about side effects with the pump?

  • Yes, I was concerned about side effects, concerned about having a foreign object implanted in my body, concerned about all those things… I didn’t even consider it until after I’d had 3 PNE surgeries and countless other treatments through the 20-year span that I’ve had pelvic pain, from bladder hydrodistentions to trigger point injections and all kinds of PT from the best. I’ve traveled to the top IC and PNE doctors in search of help and been told my situation is intractable, incurable, unfixable… so I was going out of my mind with 24/7 pain and frankly, did not want to continue another day like that. I decided instead of searching for a way to treat the IC and nerve damage, I needed to treat the PAIN. That’s when I found Dr. Prager… I was also interested in ketamine, and my first impression of Dr. Prager was when I found him discussing ketamine and CRPS in his YouTube videos.
  • To continue… I did try ketamine with Dr. Prager…. for three days at 4 hours per day. It was an amazing SUCCESS!!! I was pain free by the third day, rose up from the bed and wanted to dance I was so happy!!! My sister was with me (she held my hand during the ketamine infusions and helped me while I was experiencing hallucinations and might otherwise have been fearful) Anyway, she saw the miracle happen that day as we walked around the UCLA area and enjoyed a meal. I even drove part of the way home!!! HOWEVER, by the end of the 2nd day, my bladder began to protest and by the 3rd day I was in an all-out horrible flare from hell. It was awful. SO, we learnd without a doubt that people with IC (or at least THIS person) are not candidates for ketamine therapy. I asked Dr. Prager what was next, and he gave me the options of neurostimulation – or – a pain pump. I asked what he would do if it were him, and he immediately replied, “pain pump.” He explained that the stimulator was a viable option and he does many of them for other types of nerve pain, but he already had two IC patients who were successful with the pump and are now back in the mainstream of life. I spoke with one of them and felt reassured. That’s how I got to the point of being willing to try the pain pump. It was a last resort, as I was bedridden and in a reclining wheelchair to go anywhere. I literally could not sit, stand, or walk at that point.
  • The main medication in my pump is bupivacaine, as it provides numbing relief to my bladder and to the left pelvic area where my nerve pain was so excruciating. I tell people it feel like your cheek after having a shot of novacaine at the dentist office. HOWEVER, it doesn’t take away ALL the pain. I am not “normal” by any means. Because the bupivacaine relaxes my bladder sphincter, I am incontinent off an on. I have been having recurrent bladder infections because of this, which are bad because I have break-through bladder pain. Then the antibiotics I have to take hurt my bladder as well. So that has been a negative side effect. I also continue to have bowel issues because all these medications slow down the digestive process. I take a great medications for that, called Linzess, which is a new drug that is helping lots of people who get constipated because of pain medication … but nothing is perfect.
  • The good news is that I am up and mobile, after being bedridden for 3 years. I was to the point of needing caregivers to help me up, I could not even walk around the block, I couldn’t stand long enough to cook dinner or do anything…. so the difference now is night and day.
  • I wouldn’t encourage anyone to get the pump who is not in those last stages or getting close to it. I think it is a last resort kind of thing for those of us who have intractable pain and have not found relief in other treatments. Yes it has been a miracle for me, but for someone who is still active, where pain may be an irritant and inconvenience rather than a 24/7 form of torture, I would tell them to make sure they have tried other therapies first. Because a pump, or a stimulator, are a permanent presence in your body. I went through psychological testing before getting the pump to make sure I was ready for it. I recommend that everyone who gets an implant go through the testing. It is possible to remove a pump or stimulator, but it would be better not to put your body through that in the first place.
  • Plus you need to have a pain specialist/ surgeon who is experienced with the pump, understands nerve pain and CRPS, and is creative with the medications … Bupivacaine is an off-label use drug, as is clonidine, the other “not usual” drug in my pump. The three drugs I have are morphine, bupivacaine and clonidine. There are other drugs Dr. Prager would try if these had not been successful. Every patient has customized medications… the percentage is also customized. For me, bupivacaine is the main drug, then clonidine, then morphine. Morphine is the smallest amount for me, whereas for someone else it might be the highest. Nerve pain does not respond to opiates like other pain. It’s vital to do this with the right doctor. In the city where I live, there are no doctors who could do this. i was offered a pain pump by my local doctor, but he told me I would be his first with bladder pain instead of back pain, and that the only medication they use is morphine. I knew enough NOT to go with him.
  •  Well I really got on a roll here. I hope it helps clarify.  Thanks for inspiring me to update my information. I really hope to help others who may be in the desperate situation I was in. Pain is a horrible cross to bear.
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10 responses to “How am I doing with the pain pump?

  1. Hi there, I am SO happy for you and I pray that I have even half your result when I have a pump put in in September of this yr (2014). I am like you; bed ridden for 3 yrs, cannot sit, stand or walk. I am just in pure agony as I write this.
    I left you a PM at Pudendal Hope. Should have come here first, sorry.
    I truly hope to hear from you ifyou have the time (I type on my tummy).
    Be well:)

  2. Jeanette, hello! I would love to talk, either texting or by phone. I will get in touch with you though Pudendal Hope! Sorry didn’t see your message right away… I was at a clay workshop this weekend!! One of the miracles since Dr. Prager and the pump!

  3. Jeanette, my main concern is that not every pain pump is the same, and it is important that your doctor has the knowledge and expertise to get the catheter to the right place in your spinal column, as well as combining the right medications for you to give the relief you are seeking. Morphine by itself doesn’t work for nerve pain, as some PNE patients have discovered. I have two other meds in my pump, bupivacaine and clonidine, which “numb” the right area to give me a life back! Hope to hear from you soon!

  4. Hi, found out today that I am going all that way in all this pain just for the consult and will be called back to have whatever. I am devastated!! Meant to ask is self catheterising involved with having pump?

  5. oh Jeanette they should have explained that to you. I remember going through the consultation and a psych review and pump trial before getting the pump.

    No I don’t self-cath. I have to use pads because the bupivacaine in my pump relaxes my urethra so I leak. But that’s a small price to pay to be relieved from pain! Dr Prager tried lowering the percentage of bupivacaine but it caused my pain to return in full.force. We know now that it is the bupivacaine that is working well for me. And I don’t care about the side effect since it is such a minor thing compared to the pain.

  6. Hi Sharon, “That Doctor” as I call him, let me down big time. I will write to you about it just as soon as I have enough ‘relief’ to write longer. I really fell apart mentally and right now I am so scared! No one in Oz to help me 😦

  7. Jeanette,
    I am going to email you so we can have a longer conversation. It will be easier too. I am so sad to hear about your experience. I can relate because that’s how it was for me also, for many many years. Hang in there; there is hope for you as there was for me.

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