Topic
Double pudendal interstim neuromodulation surgery
It has now been about two months since my husband and I flew to Michigan to see Dr. Kenneth Peters at Royal Oak Hospital in Beaumont for “experimental” surgery to cure PGAD, and I am ready to share my experience with everyone. Before my surgery I was constantly aware of my clitoris even if I wasn’t flaring. Every morning, as soon as I opened my eyes, my pain began at a level 6 or 7 and I started my self-concocted “pain cocktail” of Vicodin, Trammadol, and Ativan, the method I used to get through my days. When Vicodin didn’t work, I took Percoset as well. Many days I took my “cocktail” as many as 4 times, rarely even thinking about the way it was affecting my brain. Because nausea accompanied my pain, I had a medication to counteract that. Of course, with all of these drugs in my system, I couldn’t drive, rarely cooked, and spent much of my time in bed with my tens unit and a heating pad humming away. Since receiving the double Pudendal InterStim, I am feeling more like a normal human without a total focus on PGAD. It is exhilarating to start doing the things I had planned for my retirement such as volunteering at our local museum, reading to elementary children, and even continuing my Mother’s hobby of crafting rag dolls. I still carry around bottles of pills in my purse “in case” I need them, but rarely do I have to pull them out.
Let me begin by telling you that in October a bladder InterStim (IS) was surgically implanted at Loma Linda University Hospital to control the frequency and urgency that many PGAD patients have with flares. Dr. Goldstein was hopeful that this would help alleviate my PGAD symptoms. It was a very easy process for me with no fine- tuning of the IS settings. It was wonderful for the urinary relief; however my pain still continued. Dr. G even emailed my surgeon, Dr. Siddighi, to ask if he could do the same thing on the pudendal nerve, but it wasn’t to be.
Then came the propitious meeting between Dr. G and Dr. Peters at a conference in February when Dr. G heard the magic words “pudendal interstim” and immediately thought about all of his long suffering PGAD patients. It seems that Dr. Peters is to Urology what Dr. Goldstein is to Sexual Medicine. Both of them are pioneers in their area of expertise. When they approached me about flying out to Michigan for Dr. Peter’s revolutionary surgery, my husband Nick and I jumped at the opportunity. You should also know that I have tried EVERYTHING that Dr. G suggested, and I wasn’t going to stop here. Dr. Peters quickly responded to my list of questions about the surgery, so we set a date to fly out to Michigan on June 4, 2012. And because I had such an easy time with the first InterStim procedure, Dr. Peters agreed that we could return home within 10 days. (The time in between is to establish if the InterStim works. If it doesn’t, it is removed.) This time frame was terrific because Nick would only miss one week of teaching summer school; and, most importantly, I would have my wonderful husband to myself with an opportunity to explore Michigan- actually, a mini vacation!
For some strange illogical reasoning, we made airline reservations that left California late and reached Michigan even later at 11 p.m. The airport was difficult to navigate, and we had a time finding where to catch the shuttle to our car rental. A word to the wise – if you rent a car, take your own GPS devise to help navigate the local area. It was midnight and several stops to ask if we were going the right direction before we found our way to the hospital’s Emergency Room to pick up the key for the one bedroom apartment. It is conveniently located across the street from the hospital and rents to patients for $59 a night. We enjoyed our stay there very much; however, I do have some recommendations: Do take your own towels and/or sheets plus rolls of quarters to do laundry. We were told that if we were there longer than a week that we would have maid service to change sheets and towels, but it never happened even though we were there for 3 weeks.
Our appointment with Dr. Peters was the next day at 10 o’clock. Of course, navigating our way there was not so easy because of what is fondly called “Michigan turns” which means that most of the highways in that area are one way. In order to go left, we had to drive approximately 2 blocks to the right and make a U-turn. (Do take your GPS!) Eventually we figured out that we could walk there in about 5 minutes from our apartment. Dr. Peters is very friendly and kind, but he is not a hugger and kisser like Dr. G. He was a little surprised that I gave him a big hug! I also took him a quart of homemade apple butter as a little circe – or surprise. He was really pleased as Dr. G had told him that if he was lucky, I would bring him jam. Dr. Peters was also intensely curious about PGAD, so I happily informed him about the “monster.” Then I told him about my pain cocktail which had now evolved into Percoset, Trammadol, and Ativan with a Vicodin chaser if I needed it. He was greatly concerned about my drug use and how I would detox after surgery. I hadn’t worried about this up until now, so I had this to think about in addition to the surgery.
The next day was surgery day, and Nick and I were giddy with excitement. Since God has blessed me with a lack of embarrassment, I shared with all of the wonderful nurses what PGAD is and that I was the first PGAD patient to have the surgery, potentially making history. I only had one person who responded inappropriately. All of us have probably heard this comment, “That doesn’t sound so bad”, so I educated him about the horrors of “too much of a good thing.” I remember being wheeled into the operating room and seeing Dr. Peters reading about PGAD on the OR computer. “It’s exactly like you explained,” he said as I was transferred to the table. For this surgery he was going to repurpose the IS I received in October for the Pundendal neuromodulaton. He had previously explained that the Pudendal nerve also controls urinary frequency and urgency, so I would still enjoy the benefits of the prior surgery. One of the reasons I was so giddy was that because the procedure was to be taped, my husband wrote a note on my right cheek to Dr. G. It read, “Dear Dr. G, For photography, this is my best side. Love, Linda”. Apparently no one had ever done this before, and it was the source of much delight! When I finally woke up in the Recovery Room, I was hungry. Graham Crackers and a soda helped to bring me around even more. Then I saw the long tube that was attached to my former IS incision about 4 inches down from my waistline on my right cheek. Attached to it was a control. Dr. Peters told me that I could turn it up a little for pain control if I needed to. It was just like before. I was given instructions that I could shower the next day. All I needed to do was unplug the control (easy) and loop the wire around my neck. Another doctor- a resident- mentioned that it had taken a lot of anesthesia to put me under, another side effect of high doses of highly addictive narcotic drugs.
We went “home” where I slept for several hours and seemed OK. I had another prescription for Vicodin to control pain to add to my large stash of pills and sulfa drugs for a week for infection control. Unfortunately, the night of the surgery was extremely painful and uncomfortable. I also had a “killer” headache that I later figured out was from being on my stomach for surgery. My neck was way out of whack and took a while to readjust. I am telling you this so that when you speak to the Anesthesiologist that you tell him if you are a back sleeper. I had two sets of Anesthesiologists, and the second surgery team really paid attention so that I had no headache the night after surgery.
NOTE: DO NOT DO WHAT I DID!!! READ AND LEARN!!
To help with the pain I used my best friend and comfort, the TEN’s Unit. Eventually I turned up the TEN’s Unit AND the InterStim control all the way up, and I used my pain cocktail more than once, worrying all the while about being addicted to my drugs. I was SO uncomfortable that I kept moving from the bed to the living room couch trying to find a “good” spot. And then there was a buzz in my butt, a side effect of the IS (More on that later) sending electric pulses to my Pudendal nerve.
Because I was the first PGAD patient, no one had thought to tell me that the TEN’s Unit interferes with the IS
Later Dr. Peters told me that my pelvis was in spasms with all of the electric current charging through it. No wonder I was in extreme pain for several days. I also learned that new settings on the IS take from 24 to 48 hours to kick in to be evaluated for change and should not be messed with.
Once again I had another experience for you to learn from. One night as I was “gallivanting” around in my nightgown, the wire attached to my cheek caught on the dresser drawer and yanked the wires from their ideal position to affect the Pudendal nerve. That is why I am suggesting that you take a roll of bandage adhesive tape and coil your wire like a lariat up close to your body. It was impossible to reposition it, so I will never experience the full advantage of having two InterStims in their ideal position.
Meanwhile, back on the other coast – California – Dr. Goldstein was anxiously waiting to hear how the procedure turned out. We didn’t have a lap top to take to stay in contact with him, so we went to the local library and rented computers by the hour several days a week. To my delight, Dr. G sent a photo of my cheek that I will not publish here, responding that it was a “royal butt”! He wanted to know everything. He even called when he could to see how things were going.
Apparently one IS was not enough to control my PGAD. Dr. Peters said that in extreme pain cases, he had used two InterStims. After conferencing with an anxious Dr. G, it was decided to move ahead with a second implant. It seemed logical to both doctors. If you were to look at picture of the Pudendal nerve, you would see that there are two branches to it. Without worrying that another IS would add about $20,000 to our surgical costs, we proceeded to surgery yet again. All of this time I was praying that my experience would be able to help others who suffer with PGAD. I really didn’t mind being a “lab rat”!
Magically Dr. Peters was able to fit me into his surgery schedule, and the second IS was implanted. At this point Dr. Peters was calling me himself every day to check up on me – so much was on the line for me and future PGAD patients. He would tell me the time he would call, and he called at that time. He was also traveling much of the time we were in Michigan doing news interviews and lobbying state legislatures to have insurance companies pay for a procedure he was involved in creating to help with urinary incontinence. What an amazing doctor he is!
The second surgery went well, but once again I had another restless night that Dr. Peters said was to be expected. Unfortunately, constipation was an unwanted “friend” – for me, a side effect of surgery and taking narcotics. Nick and I walked the lovely well-maintained local neighborhoods; and I drank water, consumed fiber pills, and devoured fruit. Eventually I resorted to an over the counter laxative which provided much needed relief. I have had problems of this nature ever since I began dealing with the disorder, something that I believe people with pelvic dysfunctions share. Dr. Peters added that constipation alone could be interfering with my PGAD problems. I find this to still be true. When I wake up and have PGAD, emptying my bowels will immediately eliminate it or greatly reduce it.
Now we began the 24 – 48 hour waiting game for permission to turn on the second IS control. By Saturday the 16th of June I was beginning to experience periods with no or very low pain during the day. Nights, however, were still pain-filled. Sunday the 17th was the target day to turn on the second IS control. In a normal pattern for me, I woke from a sound sleep at 4:30 a.m. on Sunday with 8/10 pain. My pain cocktail did the trick and by 6 p.m., I was able to fall back asleep. By 10, though, hard PGAD pain began to become more intrusive. Consequently I made the decision to turn on the 2nd control. Within two hours with no drugs, my pain ramped down to a better level and by 1:20 the monster was reduced to a 2/10.
Dr. Peters called at 7:45 right on schedule and was delighted with the results of turning on the 2nd IS control. Protocol had to be followed, though, and we had to test the results; so, per Dr. Peters’ directions, I turned both units off. Three hours later at 11 the pain became too intense and I turned both controls back on. By 11:30 my PGAD was down enough to go to bed without my pain cocktail. It was indeed a Good Night! I eagerly awaited the next day to tell both of my wonderful doctors the ground-breaking news that 2 Pudendal nerve InterStims were doing what they were supposed to do.
Next, my final surgery and more things NOT TO DO…Aren’t you glad I did them all for you?
More to come… at least I can tell you that it has taken 2 months for my body to react well to the InterStims. I have discovered that it takes time for nerves to adjust to any kind of new stimulation.
Waiting for this to happen was unbelievably difficult. First, I didn’t know that it would take that long, and when I kept having recurring high levels of pain, I had thoughts of suicide… all of that surgery for no return. Fortunately I have wonderful friends who are “in-tune” with me and would call when I felt so devastated. And, most importantly, I believe that God has bigger plans for me, such as being a help to others with PGAD.
When we came home I had to face my drug addiction and work on getting through the “heebie jeebies” of withdrawing from 3 narcotic drugs. I attribute my success to prayer, my family doctor who gave me a sensible way to give up my pills, and others who had been through the same process and gave me tips on making the most of reduced amounts of drugs.
I have also had more physical therapy to help relax my pelvis again plus using Vallium Suppositories. My wonderful physical therapist, Karen Brandon, vowed to to stay with me until I no longer needed her. Even though she has given up her private practice, she still makes time to see me for therapy when I need it. For those of you who haven’t had good success with physical therapy, I encourage you to find an experienced practitioner who doesn’t just “give up” on you when the standard course of treatment fails to bring relief. We have been doctor/patient/friends for well over 7 years.
Overcoming fear that the procedure is not a success has been my greatest achievement. In a way I was my own worst enemy, letting fear guide my daily life. Learning the art of Mindful Meditation and Reiki energy work have been major contributors to my confidence.
Finally, my husband and I can’t say enough positive things about Dr. Peters, his staff, the Royal Oak Hospital at Beaumont, and the people whom we encountered while we enjoyed our mini-vacation and life-changing surgery. I am including some pictures, most of them taken at the Henry Ford Museum complex where we returned on 3 separate days. It would have been cheaper to but a year long pass than to have paid every day, something to consider if you are history buffs. Remember also that after surgery you will be tired, and an entire day out is too much.
Dr. Goldstein is going to Beaumont this September to learn how to do this procedure and is taking other sexual medicine doctors as well. Soon this surgery will be the norm, and people will not have to suffer for years with no hope of a cure or any positive modification to their pain.
Here’s to more of you finding success with double Pudendal InterStim Neuromodulation Surgery and enjoying a happy, fulfilling, purposeful life again. Life is good!