Hi PNE friends
well, I’ve been through the mill. Around the block. You name it. Everything from urethral stretching with metal rods (barbaric, they call it now) to acupuncture, botox, nerve blocks, extensive PT, bladder hydrodistentions, bladder rescue instillations, meditation, prayer, and finally PNE surgery – TG approach with Dr. Hibner and the front pubic ramus approach to the dorsal and perineal branches with Dr. Dellon. A second surgery with Dr. Dellon to remove a perineal branch of the pudendal nerve to the left side of my urethra, a particularly painful spot for me.
All I can say with honesty is that every doctor along the way tried to help me. I might make snarky remarks about some of them or some of the methods I tried, but if I think about it, and remember the moments I spent with those doctors, I know their goal was to get me better, to get me out of the crushing 24/7 pain I lived in.
When surgery had taken me as far as it was going to (which was still in pain, now bedridden and housebound, and starting to use a wheelchair to go to drs. appts.) I decided it was time to do something about the PAIN. I had to get out of pain. It was robbing me of my sanity. I had held it together VERY well for the number of years I have suffered with this – 17 years – the first 13 years I managed, even worked and raised my son as a single mom, with the help of pain medication, a flexible work schedule, working from home, and finally going on disability the last 3 years- but the gig was up. I just couldn’t keep on keeping on without serious help with the pain.
I found Dr. Joshua Prager in LA (he has been director of pain mgmt at UCLA and still works with them, but also has his own practice). My consult was Dec 19. I had to have a referral to see him so Dr. Dellon sent a referral for me.
I was surprised during my consultation to be diagnosed with CRPS (Chronic Regional Pain Syndrome), previously called RSD. Apparently a few of us chronic pelvic pain patients are finding this dx added to our list of conditions! When Dr. Prager said I had “centralized pain” it was like a little burst of confetti went off in my brain – like “AHA” – because it actually made sense. My pain is so entrenched there is a groove in my central nervous system like a train track, with a little train going around and around from my pelvic nerves to my bladder and abdominal and colon nerves carrying a full load of PAIN up to the brain and bringing back fresh cells ready to be filled with more pain to carry up to the brain. (Hey, I probably have it all wrong, but it’s a cute metaphor, don’t you think?)
Dr. Prager asked me what I knew about the pain solutions he provided and I listed, “Spinal Cord Stimulator,” “Intrathecal Pain Pump,” and “Ketamine Infusions.” When I mentioned the ketamine he told me that I was a good candidate to try it and I was surprised, but also excited! I knew very little about it except for nyt’s report here on the forum when she had three days with Dr. Hibner’s trial, and I knew a couple of other PNE sufferers who were going to try ketamine infusions.
I researched online and found some really interesting You Tube videos about ketamine infusions for pain.
“Counting on a Coma” – this is the most severe form of CRPS and use of ketamine – not anything like we would undergo:
http://www.youtube.com/watch?v=PW_vstm0 … re=related
MY KETAMINE EXPERIENCE
On Tues, Weds, Thurs, Jan 24, 25, 26 – I had a three-day infusion of ketamine. My experience was awesome. Apparently I am a very good ketamine patient. I was fortunate enough to have my wonderful sister at my side for all four hours of the infusions each day. She held my hand (we figured that out the second day) and would respond to me when I surfaced and was confused. I remember “waking” but still feeling like I was in a dream state. Everything was WEIRD – there was no space between objects, my surroundings were thick, as if you could put your arm out and it would “stir'” the colors and textures. Was I tripping? YES. The first thing I would do is look for my sister and say, “Patty?” and she would say, “Yes, I’m right here sweetie” and I would say, “Where am I?” and she would say “You are in the treatment. It’s okay. You are doing really good.” and I would say “oooohhh” …. I don’t remember much of it but she has filled in some of this… the second day I played my ipod and she noticed I wasn’t liking a song at one point… I was saying, “no” and she said, “do you want a different song?” and I said “yes I think so!” and she changed it and I was fine again, be-bopping along. AT one point I even sang along with Louie Armstrong on “What a Wonderful World” that makes me smile… I remember telling my sister, “Music is good!” and she said ‘yes, music is good” and I said “is it okay for me to just listen to music?” and she said “yes, that’s right, just listen to your music.” The main thing I seemed to be concerned with every time I surfaced was if I was in the right place and supposed to be doing what I was doing! IT was like a sanctioned LSD trip…. although I don’t really know what that is like, it is how I would imagine it. And my sister was my “safe place” – she was my anchor. I felt safe holding her hand and riding the music. I could see if I had been alone and woken up in those hallucinations I would have been scared and freaked out, but because my sister was there and she reminded me that it was okay, I was in the treatment, and her voice was very soothing and loving, I felt safe and grounded. I was a happy passenger on the ketamine train.
And the coolest part is that from the 2nd day on, I had very little pain. It really worked! I did not use any ice since the first ketamine infusion (and I was never without it before) and on the 3rd day we took a walk, further than I had walked for 2 years.
It was a miracle.
Unfortunately, my miracle has a catch. Darn it.
I have interstitial cystitis, or IC for short. I had read that recreational ketamine is causing addicts to show up in ERs and doctors are finding that ketamine can damage the bladder — but I thought, just as Dr. Prager also explained to me, that in a controlled medical setting the ketamine would not hurt me.
Two days after my third infusion, I woke up with MAJOR bladder pain. Major. The kind that makes me down 2 pain pills and a pyridium (the stuff that turns your pee red when you have a bladder infection) Well, I never have an infection. With IC, the urine is always clear – everything that goes through you just freakin’ HURTS. I was curled in a ball for about four days waiting for the bladder flare to pass. I could not control the pain and called Dr. Pragers’ office several times over the weekend, leaving messages. He called me back on Monday and said it was a shame but since the ketamine was obviously metabolizing in my bladder and causing pain, he didn’t want to possibly damage my bladder – – so on to the next step. Choo choo – all aboard the Pain Pump Train!
When Dr. Prager and I had discussed all the options, he said I could choose the stimulator or the pump. I asked him if it were him in my situation, what would he do? He said the pain pump, because there were less risks and more certainty that it would work for me. He explained that it was harder to adjust the stimulator just right for pain that is lower than the lumbar spine. First of all, placing the lead is harder because it has to be threaded down the spine instead of up, which is the way everything is designed to do with the spine. (This is called a retrograde approach with the stimulator)
Anyway, I had done a lot of research on the stimulator and I knew another pain patient who had her stimulator removed and a pain pump placed and she was much happier with the pain pump.
So i went with the pain pump. Or at least the pain pump trail. It is scheduled for Feb 13-14 (an overnight stay). Then, if it provides relief, we will schedule the permanent implantation a few weeks later.
I am ready. I wasn’t ready for a pain pump before, but I am now. I will let you all know how it goes!
p.s. The really cool news is that I am still experiencing positive benefits from the ketamine, now that the bladder lava flow is over!
I am walking, I have been quilting!! (a miracle) and I have been sleeping! I am also happy, enjoying life, laughing more, seeing colors brighter, you name it. So the ketamine was a beneficial, positive experience even if I can’t continue it. I was so grateful to see the smile on my sister’s face. More happiness than I’ve felt in a looong time!