It’s a miracle! Success at last!


I posted the following story on the forum of in February of 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.

I now have a pain pump in my tummy! For details of the pump trial and surgery, as well as the story of my journey to get the pump, read 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. I now have a pain pump in my tummy! (Something I thought I would never do — it scared me at first.)

Anyway, the pump contains 3 medications that work together to control my pain. My favorite is BUPIVACAINE, an anesthetic that provides numbing relief to my bladder and irritated pudendal nerve. The others are MORPHINE, an opiate, and CLONIDINE, a blood pressure medication that works synergistically with the other meds to reduce pain. (For details of the pump trial and surgery, as well as the story of my journey to get the pump, read on!) 

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!

1997- dx’d w/ IC
2006- dx’d PNE
8/2010 – Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 – Dr. Dellon, left dorsal/perineal nerve surgery. Pain returned.
1/2012 – 3-day ketamine infusions. Brain and CNR were “rebooted”- pain-free for several days!
Unfortunately, IC bladder flared so I had to stop.
11/2012 – Intrathecal pain pump implanted, main ingredient marcaine. Dr. Joshua Prager, UCLA. 
As of 2/1/13 I am basically pain-free! Driving, sitting, living life again!

5 responses to “It’s a miracle! Success at last!

  1. Reading about your transformation makes my heart glad and makes me smile. Not from a selfish point of view, not because I am thinking “maybe there is a solution out there for me too”, but simply because I can imagine SO clearly your elation and relief. I have imagined and dreamt of that sensation so often. So happy for you. Your information and instincts regarding the causes, the bio-mechanisms and brain chemistry which cause these conditions make perfect sense to me. Free at last, free at last!!! Congrats! 🙂

  2. Thank you so much Jemster! Your comments mean a lot to me. I can tell you are on this same horrendous journey with this disease and I do not think it is selfish to want a solution for yourself at all!! I used to read others’ success stories and try to figure out how to “get there.” My wish for you is that you find relief and the chance to live a pain-free (or at least pain-reduced) life — and soon!

  3. You are more than welcome. Your blog is lovely (and beautifully designed if i may say so!) I’m sorry I didn’t find it sooner! Maybe I was meant to find it now, to give me hope when I need it so badly. Not that I believe in ‘signs’ or ‘fate’. But it is at least a happy coincidence, and good timing! My doctor is currently investigating anaesthetics and pain management for me. Who knows? Maybe ill get lucky this time too…Your story has given me a little boost. Thanks. 🙂

  4. So happy for you. I am sending my records to Dr Prager now. How much did the pain pump cost as i understand he doesn’t take insurance.

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