I would like to think of myself as a strong woman and if not for IC entering my life back in 1999, I would most likely be fighting for the rights of disabled kids, which is what I was doing before IC. Now I have been in a fight for my own life and the right to make informed choices about treatments.
I have a difficult to treat interstitial cystitis that no medications or any of the dozens of different medication/ therapy combinations have helped enough to be able to stop using daily 24/7 pain therapy. I hated the limitations that being on these powerful medications added to my already limited life, so I began to look into clinical trials and some of the less ordinary IC treatments. I was denied several clinical trials due to various factors, but one treatment kept coming up in my discussions with my team of Doctors and Nurse Practitioners. It was a treatment that would require surgery, but it was held out as my last, best hope.
Interstim is an implantable pulse generator or IPG that when placed with leads next to carefully chosen nerves was supposed to lessen my frequency/urgency (which was 40+ x a day) and if I was “one of the lucky ones” could reduce my severe pelvic pain. I took all the information that I could get, pamphlets, videos, printouts of various web sites. I went to both the ICA and the ICN websites looking for answers and asking questions.
Many patients told me that Interstim was not for pain. I wish that I had believed them but… I have to admit that since I had pamphlets from Medtronic (the makers of Interstim) that told the success stories of women who had not only lowered their frequency/ urgency but also had gotten pain relief, I was sold. These were the magic words I so wanted to hear. Since it was coming straight from the company that made Interstim, why should I
doubt it? I was “all in.” Schedule the trial! In the words of a famous boxing announcer “let’s get it on!”
On November 27, 2004, my parents and I traveled the 350 miles to have my trial Interstim surgery. I was very nervous and excited but I was also trying not to get my hopes up. I had told my husband my concerns, such as “what if this doesn’t work and how will I mentally cope with that?” I was the only one voicing that concern though. Everyone else was very positive for me, though I know now that my parents and husband had the same worry I did.
Into the OR we went, and right away I knew this was not as easy as the videos and pamphlets had led me to believe. It was a three hour and 45 minute procedure where I was poked by 10″ large bore needles, while
awake, so they could find the “sweet spot” as the Medtronics rep and my surgeon called it. I remember that I had cold sweats so bad that the foam I was lying on began to drip. My bladder was in agony from lack of voiding and from lying on it.
Just after my Doctor said “That’s it. Sorry Sonja, we just can’t find the spot.” I felt, well nothing. By that I mean the pain which had been causing tears to run off my face seemed to have disappeared. I said “Wait, whatever you just did is it.” So after doing some electrical tests that literally made my toes curl, I was taped up and turned on.
My trial was underway.
For the next ten days I wore what looked like a T.E.N.s unit hanging from two tiny wires that came out by my tailbone. I was bruised from waist to thigh, but my bladder hadn’t felt so good in years. I was thrilled. Schedule the permanant implant! I was sure I was getting my magic bullet. After all if the trial worked so well, the permanant IPG would be even better, right?
On January 17, 2005, I was back in the hospital for one more surgery, implanting the IPG and two leads. This time I was put under, which I had not wanted to do. I was worried that if I was asleep they would not be able to find the “sweet spot.” I even begged to be kept awake, but the Medtronics rep said either I get the general anesthesia or they would have to cancel.
“Cancel! Not my magic bullet,” I thought. I said, “Let’s do it” even with that little voice saying “how will they know it’s in the right spot.” But when you have lived in agony for years and someone shows you a way out of that darkness, you will try just about anything and, believe me, many companies bank on that fact.
I woke in post-op in a lot of pain, groggy and wondering how it had gone. I was given a room (though I had expected to be released). Later that night the Medtronics rep came in to turn the unit on and program it. I knew, from the second that IPG was turned on that my instinct was right, it was not in the same “sweet spot”. Right away I told the rep, it was in the wrong place. He told me it was exactly where the fluoroscopy had said it should be. It was just a matter of programming and then all would be fine. But I couldn’t shake the feeling I had made a huge mistake. I prayed that my feelings were just nerves. It would turn out to be nerves, just not the way I thought.
I stayed in the city for six days and got reprogrammed twice during that stay. That was the beginning of a series of long stays away from my family, and many short trips all to be programmed. I had a total of 35 programmings from January to September 18, 2005 when I turned off the interstim for good.
Why so many programmings you may wonder? I was in pain, pain not from my IC, but pain that I had never had before the implant. I was also having strange symptoms. My toes would curl painfully when I urinated or had a bowel movement. I would get “shocks” while walking that went down my leg and thru my foot. My Interstim would “amp up” (get stronger) if I sat or laid down. It would “amp down” for the same sort of things. My tailbone area and right leg and hip were hurting so bad I had to start Fentanyl patches. The IPG moved around freely under my skin at my hip. In fact, after 10 months it never did “scar down” which was something all the information I had studied so long had said should happen in the first weeks post-op.
I put in many calls to the Medtronics rep, since that is who they tell you to call with problems or concerns. For the first six months, it was always “a programming issue” thus in all of those 700 mile trips, I rarely saw the Doctor, usually just the Rep. After about six months the pain had me bed-bound, deeply depressed and the worry I had about “what will I do if this fails” was coming true.
I didn’t see any more treatment options. My surgeon wanted to try Botox, but at $6,000 per round, it was not even a remote possibility. But the Medtronics rep had the answer, get a revision, which meant going through it all again including a new IPG, new leads. This was when I began to wake up and realize I was not talking to a Doctor here. I was talking to a salesperson, one who was convincing me to trade in my “lemon” and get a new model… at my cost, of course.
As a result, the proactive Sonja began to emerge. I turned off the IPG and my pain decreased a bit but not nearly enough to live with. I began to plan having the whole shebang removed from my body. It seemed like that should be easy enough, but it’s not. The rep would call me several times a week asking when I was coming back for another programming. I told him that I was sure I had an infection, as I could feel fluid around the IPG. He assured me that if that was true it would look “really icky” and my site looked great so it couldn’t be that.
I called my surgeon and said I wanted to see him alone. He agreed. When I saw him, they performed a cat scan and I was put in the hospital that day for a deep staph infection that required weeks of treatment before I could safely have surgery to remove the IPG and leads. Of course, weeks of antibiotics are not the best thing for an IC bladder. My Hunners Ulcers began to bleed for the first time in two years. My weight dropped down to 98 lbs. I was unable to walk more than just to the bathroom, due to the intense pain in my leg and foot. The only position I could tolerate was laying down on my left side. I laid that way for weeks.
Finally, on December 28, 2005, I checked back in for my third surgery. It was an emotional time for me and my family. We had been through hell and back. My parents and my husband felt guilty for encouraging me to have Interstim implanted, but I never blamed them for any of it. I did feel lost. This had been my last hope and it had gone terribly wrong. I was wondering if I had permanently damaged my body. Would the pain be gone when the interstim was gone? There were so many questions left unanswered as I went to the OR.
I awoke this time to pure agony. I think I would of screamed in pain but my voice was gone from being intubated for 4 1/2 hours. I was given morphine and was eventually put on a morphine pump to self-administer the morphine as I needed it. I used all the morphine that the pump would let me have and it still wasn’t enough.
The first 24 hours post-op are a blur of pain. The next 24 hours were of shock. I had drains hanging out of me, filling up with a brownish thin fluid. “Odd looking!” said my nurse. My surgeon came in and he seemed shocked as well. He told me that after opening the IPG site that fluid had poured out of me. He estimated several hundred cc’s of this brown thin fluid.
He was worried about my pain, as he had to cut away several inches of rotting flesh and scrape out the entire site. He said the IPG was not scarred down at all, just as I had thought. It was floating around. He also said he had tried his best to fix the area so I wouldn’t be disfigured too badly. His words were “you have been thru enough, I don’t want to leave you disfigured too.”
Oddly enough, for the first time in ten months I was able to lay flat and even rolled over to my right side in my sleep. And sleep I did! After days in the hospital, I went to the hotel with my husband and I slept around the clock, waking up only to use the bathroom and to take my antibiotics. My body was exhausted from ten months of abuse.
I am now seven weeks post removal. My pain is mostly IC pain now but I am left with some tailbone pain. My right leg has nerve damage. It just “gives out” with no warning. I have fallen several times. And that “brownish odd looking fluid”? Well, it seems it may have been caused by a leaky battery. I do not know what having a battery leaking into me for months will cause.
I just take it one day at a time. I try each day to make sure that this won’t happen again to anyone, but I know that as I am writing this some woman is excitedly waiting for her turn to get the magic bullet. The problem is that bullets can kill you.
“Once Upon a Hysterectomy”
By Sonja (Submitted September, 2005)
Hi my name is Sonja, I live in a tiny West Texas town of 5000 people. Four of the best looking residents are in the photo I sent with my story. My children Tyler, Alex and Leandra and my beloved husband Danny. We thought on October 15 1998 that we were finally going to get on with a life that had been put on hold due to a very complicated pregnancy and the premature birth of our daughter Leandra, she had alot of heath issuses as most 28 week preemis do, and by the fall of 1998 she was healthy enough to start school! So on the day she started I signed up at Sul Ross University of Texas in Alpine to finish my education in child phsycology and a minor in deaf education. I had been trying to graduate for 15 years!!! But now it was time only needed two semesters…… Well I was also working as a waitress to pay for above schooling and while working started to have alot of breakthru bleeding, I put it down to being on my feet so much and ignored it until I just began to get to tired,so I went to see a local Family practioner who precscribed hormones, that didn’t work, so he said lets do a D&C that should help. I have had them before with no problem, so I said fine. Had the D&C on Monday and by Wednsday knew something was wrong, called the same DR. He told me to stay down and rest, duh, well by Friday I had a fever of 104 and had a foul smelling discharge (sorry). I was put in the Hospital and told I needed a HYSTERECTOMY, and it would be done Monday after I had 3 days of antibiotics in me. This DR. told me not to worry, safe simple surgery, etc. Words that still ring in my ears.
During the hysterectomy my bladder was badly damaged, not just a little nick, but bad enough where it took 11 surgeries to put back all the pieces the nice family practioneer had cut into shreds. My first repair (at a different hospital) took 13 hours. I was near death, I still cry when I think of it because I didn’t get to say goodbye to my children before the helicopter took me away. So postop I had a subrapubic catheter and a foley catheter for 12 weeks, yes I had infection after infection. I also had surgery after surgery, every time requiring long term cathing.
One day at my surgeon/oros office he told me that he thought I had IC due to the pain and frequncy issues that regular meds should of taken care of. He did a cysto in his office (Does that hurt or what?) and said yes, sorry you do have it, try these pills, Elmiron of course. Nothing happened except my hair falling out. He increased the dosage to 3 pills every 4 hours, just lost hair faster. I kept telling him the pain was unbearable, he didn’t want me to get “addicted” to pain meds , so he refused to give me any. I lived that way for about two years, contemplating suicide often. Only those people in that picture were not going to let that happen, they loved me thru it.
Danny told me one day to get online and try to find some information about IC, he said ther has to be something or somebody out there who can help. There was, I found the IC-Network web site, I even called the phone number and spoke to Jill, who gave me a much needed kick in the butt and a pep talk and somewhere to start looking. She was my angel , saved my life. I researched and found a Urology group that had a IC clinic in San Antonio, 350 miles away. That was a wake up visit, 4 hours Mickie Autry spent with me. We started me on pain meds, bladder instills using lidocaine/elmiron/bicarb/. I remember cyring after the instill because for the first time in years my bladder wasn’t killing me.
Now I still do instills, watch my diet, see a pain managment Doc. I have a e-stim. I am always looking for new treatments and will try tehm all if I need to, This time I REFUSE to let ANYONE tell me how to treat my own body. This is my Body , my disease. I may not have won the fight yet, but I am still fighting HARD! I will never give up again.
Sonja
“love never fails”…1 Cor.13:1-21
UPDATE
