Success with pain pump!!!

I am reposting my story so it doesn’t get buried in the middle of this blog. This was written when I realized I was going to be able to live my life again, after several years bedridden and suffering in extreme pelvic pain.

Originally, I posted this on the forum of pudendalhope.com in February, 2013. You can find it here:

 

Hi PNE friends,

I never thought I would be posting here. This is where I used to come and read about others’ successes just so I knew there was hope, that some people did get better and have a life again.
Now that person is ME! I had to go through a LOT to get here, but I can say it has been about a month now that I have been pain-free, or feeling minimal pain that I am able to ignore. And I have been told to expect even more improvement as time goes on.

What happened: After 17 years of IC and PNE, 2 hydrodistentions, every medication you can think of, countless nerve blocks and PT, 3 PNE surgeries and ketamine infusions — I finally found a pathway out of the pain. In Jan 2012 I tried ketamine infusions with Dr. Joshua Prager, director of California Pain Medicine and the UCLA Pain Program. They worked … for only two days, when my IC bladder went into a horrible flare that had me doubled over in a fetal position. (Ketamine is known to cause bladder damage, so those of us with IC unfortunately cannot benefit from it.) Anyway, just the fact that I had a couple of great days virtually pain-free made me realize how much of the pain is faulty perception of the brain and central nervous system, and I began reading about Central Sensitization. I learned that pain researchers are starting to understand that many chronic pain syndromes are actually a form of CRPS, or RSD. Dr. Prager told me he even suspects that IC is a form of CRPS, and said that if I had a functional MRI my brain would be lit up like a circus, as the pain signals had become “upregulated” to the brain. My brain and nervous system were on hyper alert, so that even minimal pain signals were amplified in a cycle that spun out of control, so that every moment of every day (and night) was misery. It would take strong intervention to block those signals at the pain receptors between the nerves and the brain.

I had spent the past two years totally bedridden, only leaving the house for doctor appointments, using a reclining wheelchair because I could not sit. I was constantly rotating ice packs and my heating pad 24/7, along with heavy duty medications such as the Fentanyl patch, hydrocodone and valium. When ketamine was ruled out for me I was in despair, and all I could think about was a final solution. I didn’t really want to die, but I just didn’t want to be here anymore. I was going out of my mind with pain. I told my family it felt like I was being tortured.

I had been given two more options by Dr. Prager, but it took months for me to accept having either one of them — a neurostimulator or pain pump. I asked him what he would do in my place, and he said “the pain pump” because he was “sure he could get the pain.” I learned he had two other patients who had been just as severe as I was, and now they were both thriving. One was an active mom and grandmother who has had her pump for the past 15 years. He had her call me the next day and I felt an instant kinship with her. She was very kind and reassured me about the process many times.

In October of 2012 I had the trial to see if the pain pump would work for me. I had a procedure with local anesthesia where a specialized catheter was inserted into the spinal fluid near the nerve roots affecting the pelvic area. It was connected to a drip containing bupivacaine (marcaine), morphine and clonidine. The main ingredient was bupivacaine, an anesthetic.
It was miraculous! I spent the day in the UCLA outpatient facility, happily walking the halls and sitting in various chairs in the waiting room — something I hadn’t been able to do for years! The pain in my bladder, vulva and left buttock and leg was gone! My family and I were giddy with hope, and we scheduled surgery to implant the pump for the next month.

On November 13, 2012 I had the surgery. It took two months of adjustments, as they had to start with a very low dose of the medication, but as they titrated me up I got better and better. On January 4, 2013 I realized I had “arrived.” I felt great! I even drove all the way home from LA, with my astonished sister in the passenger seat, amazed at my transformation. Since then I have gone to the movies with my husband (holding hands and feeling like high school kids on a date), I’ve driven to the grocery store, to friends’ houses, to appointments. I keep pinching myself, hardly believing this is real.

It took me a long time to take the step of having a foreign object implanted in my body, but now I’m so grateful for it. I think I need to give my pump a name, to embrace it as a part of myself that is giving me new life. My sister and my husband have tears in their eyes when they see me walking around, doing everyday things, because they were there with me in the trenches, when I no longer wanted to continue. Now I have a future, and I plan on experiencing every bit of it! On my feet, not in my bed!

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17 responses to “Success with pain pump!!!

  1. So thrilled for you! If only this was made available to all of us! I think when I feel brave enough I will qwestion my specialist,( it will cost me about £200 to sit I front of him!

  2. Hi Anne,
    Thank you for your comment. I’m thrilled for me too!!! Most of the time I can’t believe I am able to be up and moving around again. Do you have IC or PNE? You can email me at scaseyquilts@gmail.com. 🙂

  3. MY HUSBAND TOM HAD SURGERY 2 YEARS AGO AND HE IS NOW WORSE THEN BEFORE SURGERY. WE TRIED THE PAIN STIMULATOR AND THAT DID NOT WORK. NOW GOING FOR THE PAIN PUMP , AS SOON AS MY INSURANCE OKAYS IT.
    WE ARE LIVING IN HELL RIGHT NOW AND HAVE BEEN.
    GOD HELP US.

  4. I am so sorry. I empathize with what you are both going through… My husband suffered along with me.
    Is your husband having a trial of the pain pump? The reason I ask is that not all doctors who implant the pain pump use the same medication, or “cocktail” of medications that my doctor used in my pump. The most effective medication for my pudendal neuralgia and IC has been bupivacaine, or marcaine. Just recently I have learned from others’ experience that morphine alone does not work on pudendal nerve patients. It’s important to have a successful trial before you go ahead with the pump, and know what kind of relief you will experience.

  5. I’m so glad to hear you continue to do so well. Dr. Prager has begun talking to me about a neurostim and pain pump. I am leaning more towards the pump. Especially after hearing how well you have done. While my pain never got as bad as yours, I’m tired of being at home while the rest of my family is out enjoying one another. I think it times to make a decision. I do have one question, did you ever have physical therapy? I don’t remember us ever discussing that before. My pt thinks my most pressing problem is my connective tissue and thinks that with diligent work I might have less pain in six months or so. I’m thinking I want to give that a chance before going to the extreme. So what, if any, we’re your experiences with pt?

  6. I had extensive physical therapy with some of the best, traveling to San Francisco as well as the LA area over a period of three years. I stayed for weeks at a time for intensive therapy and nerve blocks as well. It did nothing but flare me worse. After some sessions I could barely walk out of the room, but I was told over and over that long-term PT was necessary to “release” the trigger points that were causing pain. I have read of successes (especially in marketing literature – haha) but I don’t know anyone who is “healed” from it. However, I do know people personally who are worse off from physical therapy. In cases like mine where neuralgia is the main problem, the goal is to “turn down” the central nervous system, not to stimulate it by physical manipulation… especially pressing on the area where pain originates! As my husband says: “Don’t make it mad.”

    However, I remind everyone that this is MY experience only — and everyone is different. I can’t say whether or not PT would help someone else. 🙂 Best wishes to you!

  7. scaseyquilts
    my husband is going through the same thing, we have tried pain pump and pain stimulator , medicine of all kinds. what doesm a person do now

  8. I am so sorry Maryjane. The only help I can offer is that it depends on the skill and experience of the doctor who implants the pump and manages the medications in it. I know patients on the East Coast who have had very poor outcomes with pain pump trials and decided against the pump. Why did their trials fail why mine was so successful? We have found that there is a big difference in the way doctors do the trials. The main difference has been the medication used in the pump. Most doctors seem to be comfortable using only one drug, morphine, an opiate which by itself does not touch our nerve pain. The addition of bupivacaine and clonidine to the morphine was effective in my case, as I discussed in “What’s in your pump?”

    Unfortunately, I do not know of any doctors besides Dr. Prager who follow his protocol. I wish I did because so many people are suffering. Many have become close friends through email, phone and Skype. I wrote this blog because I wanted to connect with people who are suffering like I was and let them know I am out of pain and living life again. Now the only thing I can say is “come to California and consult with Dr. Prager.” That is what he and his office staff tell me when I ask how I can help others like me. Please let me know if you find any other answers. Best wishes to you.

  9. THE PAIN PUMP DID NOT WORK IT CAUSE MORE PAIN IN THE GOIN AREA, THAT WHERE MY HUSBAND PAIN IS. NOW WE ARE LEFT ALONG AND GOING TO SEE MORE DOCTORS IN MINNESOTA. DOCTORS OF ALL KINDS HAVE GIVEN UP ON HUSBAND OR WORSE DOES NOT WANT ANYTHING TO DO WITH PROBLEM.
    LITTLE FALLS MN

  10. One question … I have pain on both sides of the pudendal, worse on the left, moderate, but it’s like you said. It seems that there is a trigger that causes pain to shoot. The pain pump only works for one side of the body?

  11. The pump works for both sides of the body… I feel numbness throughout my pelvis, abdomen, hips, back and pudendal area! My pain is worse on the left side too – in fact it originated deep in the tissues on my left side. It felt like a knife (I can still feel it but it is numbed). This is where my surgeon said that perineal branches of the pudendal nerve were damaged, which irritated the bladder, leading to IC. (That’s one theory). My pain specialist believes that IC is a form of CRPS.

  12. when you say you have numbness in the pudendal area — do you have sexual sensation? what about continence?

  13. yes I do have sensation. I have some incontinence as the urethra is relaxed from the bupivacaine and clonidine. But I’ll take that any day over the pain!

  14. Thanks for your reply. Has Dr Prager installed this pump successfully in other pudendal patients?

  15. I know of two other IC patients of Dr. Pragers who have had long-term success with the pump, because I was able to speak with one of them before I got mine. I don’t know if he has any pudendal-only patients.

  16. Please if possible can upu note the IT Pump daily doses of all 3 meda? My husband has the pump recently and the doctor doesnt understand bupivicaine success and safety. Finally a medicine that helps and the docyor keeps increasing the morphine and not bupivicaine. Now after 3 yr bedrest he is sleeping all day. I need help with the doctor understanding. She is upset that we are begging her to try working more with bupivicaine. No docs in ID understand RSD CRPS. God bless you and thank you for sharing your success!!!

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