This page will be about surgeries I have had for IC. I have looked and IC Association, IC network and Wikipedia, and have compiled the list of definitions of the surgeries I have had. Other surgeries will be added as we get more people involved in the website and we add the surgeries they have had as well. I have used mostly Wikipedia for all of my definitions.

Cystoscopy with hydrodistention: This is the procedure that urologists use to diagnose IC. It is done under general or regional anesthesia. They insert a cystoscope (used to examine the interior of the bladder), through the urethra and into the bladder. The “scope” is fitted with a miniature camera, which allows the doctor to see the interior of the bladder. The doctor then examines the interior wall of the bladder. The doctor then begins filling the bladder with fluid. This causes your bladder wall to stretch out, allowing the doctor to inspect for the changes of IC. Some of the changes include: glomerulations (pinpoint hemorrhages occurring on the bladder wall and seen in the majority of IC patients), and Hunner’s Ulcers (patches that are present in about 10% of patients). The Hydrodistention can reduce pain in some IC patients, and may be therapeutic as well as diagnostic. The patients who are helped with hydrodistention have had improvements lasting 3-6 months. The procedure may be repeated to continue the therapeutic benefits.

Not everyone is helped by this procedure and it may take several weeks before any improvement is noticed. I had a cystoscopy with hydrodistention in March of 2005. My OB/GYN was going cut out my endometriosis and wanted to check for IC. He discovered I had IC. That was the beginning of this long continuing journey. I asked to see the pictures that were taken with the camera. The before and after is astonishing (if you can see the pictures ask!! It helps to know what you’re dealing with)! After he had filled it up and taken the fluid out, the walls of my bladder were filled with tiny hemorrhages. There were so many, it looked like my whole bladder was bleeding! It was an eye opener. Unfortunately the hydrodistention did not help with my pain. My urologist did another one in November of 05 and there was no pain relief then either.

Nerve Block: is an injection of a local anesthetic onto or near nerves for temporary pain control. This can also be used as a diagnostic tool to identify specific nerves as pain generators. Permanent nerve blocks can be produced by the destruction of nerve tissue. Temporary nerve blocks combine a local anesthetic (like lidocaine), with epinephrine (a hormone and neurotransmitter), a steroid (corticosteroid), and/or opioids. Epinephrine constricts the blood vessels which delay the diffusion of the anesthetic, steroids help reduce inflammation, and opioids are painkillers. The injected nerve block can be either a single treatment, multiple injections over a period of time or a continuous infusion. Permanent nerve blocks can be affected using alcohol or phenol to selectively destroy nerve tissue, use cryoanalgesia to freeze nerves and radio frequency ablation (definition coming next) to destroy nerve tissue using heat. Nerve blocks are an outpatient procedure and can be performed using an ultrasound, fluoroscopy (live x-ray) or a CT, to identify the position of the needle.

Radio frequency Ablation: (sorry with this link you have to scroll down quite a bit to read the whole thing). When you get a treatment, a needle is put through the skin towards the target tissue. The needle is connected to a generator, which has the ability to test motor and sensory feeling, showing the doctor the proximity of the needle to the desired nerve that is involved in the generation of the specific chronic pain. The current flowing through the needle produces heat at the tip of the electrode, which heats and destroys the target tissue. The idea behind this is that the pain signals with not reach the brain and the pain sensation will be removed. They watch through an ultra sound or x-ray to see the placement of the needle, and they take care to avoid the destruction of the vital motor nerves, which may course along the nerves that need to be ablated.

In March of 2006 I was introduced to the pain clinic at the hospital where my doctor works. They tried some different medications and decided to do a nerve block. The block would last anywhere from 2 days to a week. If that worked then I would have a radio frequency ablation. So I went in for the nerve block. I was sedated and had some local anesthesia where they were going to stick the needle. I felt minimal pain during the procedure. The block worked and I was pretty much pain free for 2 days. (That is the part that really sucks. You have the pain free days waved in front of your face, and then it’s snatched away.) So a couple of weeks later, in April of 2006, I had a radio frequency ablation. I was sedated again and given local anesthesia. Now when it comes to procedures, I’m a big baby. I can’t even stand IV’s; I almost pass out every time! So the pain during the ablation was worse then the nerve block. I screamed and was given a little more sedative, but not enough to just knock me out (the best part of any procedure!!). So the ablation worked and I ended up in Disney a week later able to walk and keep up all day with everyone I went with!!! Which was a miracle because I was able to walk short distances and needed to sit a lot before I had the block or the ablation done.

Interstim or Sacral nerve stimulator: (you will need to scroll down the page a little in order to get the definition) This is also called a sacral neuromodulation. This involves an implantation of a programmable stimulator under the dura mater (outermost of 3 layers of the meninges surrounding the brain and spinal cord), which will deliver low amplitude electrical stimulation to the S3 or S4 root. The FDA has approved this method by Medtronic as a safe sacral nerve stimulator for treatment for the bladder.

I had this surgery in December of 2006, and the second part of the surgery on January 7, 2007. There are 2 parts to this procedure. Both are outpatient, which is a plus, and you get to be knocked out which is a must for me (I’m really bad with surgeries). The first surgery they attach wires with little claws (think of the rope that is used in movies to go from one roof top to another, the one that has the claws so it will hold on to the roof top). The wires are attached to both sides (right and left); they also put a “pouch” where the battery will go if this is successful. They keep that open but putting the wires that will attach to the battery in that pouch. You wake up and you have wires hanging out of your back. One side of the wires (attached to the right or left) will be taped up, and the other will be connected to the pager size (actually a bit larger then a pager) remote control. Someone from the manufacturer’s office will be there to help you through this. That person will become your new best friend, you will talk to them everyday and will be just a really great person to talk to. The manufacturer will help you set up a setting and introduce you to the remote, which you will become very familiar with. Normally you would have this set up for about 2 weeks. I had it for 3 weeks because of holidays, and A LOT of scheduling mistakes! So for the first part of this what you do is figure out what settings are good for you, which side (right or left) is the best, and if you actually have less frequency and pain. The important thing to do is to KEEP A JOURNAL. With mine I wrote down everything I drank, how many times a day I peed, if my pain was decreased, and if I decreased the amount of pain pills. **Helpful hint #1, you are allowed to take a frontal shower. However, having wires hanging out of your back is really scary when it comes to water. I used to Saran wrap myself and tape up the top so I wouldn’t get any water near the wires. It helps a lot; just make sure you don’t turn around. It takes a little while to get used to it but you will be able to shower with out getting your back wet. Helpful hint #2 the constant stimulation of the wires makes you very tired. Expect to sleep a lot, and give in to it. It makes it a lot easier in the long run. ** So if all of this works out, and it really truly works then you get to have a battery. If it doesn’t work then the second surgery will be for taking out the wires. Again, you get to be knocked out for this surgery. It’s very painless, and a lot like the first one for recovery, except you don’t have wires hanging out of your back. The manufacturer will help you set up everything on the battery. He will make 4 programs each of them a little bit different. He will ask you where you feel it (which can be a little bit embarrassing especially if it’s a man like I had), but be as honest as you can, it will help out a lot more! The manufacturer will not be in as much contact with you after this, but hold on to the phone number in case you ever need it again. The new remote is very small, and you will also have an antennae that will connect. You put the flat part of the antennae where the battery is (make sure it’s flat it will take some practice), then take the plug and put it into the remote. You can turn it on after that and it will tell you if it’s connected correctly or not. After that you can turn the programs on and off, switch programs, and increase or decrease intensity. There should be someone at your doctor’s office that will be able to tweak programs to whatever your need is. The most important thing that I can’t stress enough is being honest as to how it is working. I felt that when I got the battery put in it wasn’t working as well as the wires. But maybe that was just me.