Health Organization for Pudendal Education

PLEASE NOTE: This is a work in progress. There is a lot of information to document and the "story" is not yet finished. I am trying to add as I go to keep the implant process as accurate as possible. The first 8 posts are the main journal with the comments in the posts below. Look for the dates in bold below to read the updates. The date in the subject I change to the latest date whenever I add something.

Hi,

I have been away from the forum for a while, but I just had a sacral stimulator implanted on September 9th. I thought now was a good time to document how this all happened and specifically the stimulator process.

For a quick review, I first noticed PN symptoms 20 years ago when I was just out of high school, I had no idea what they were but they went away so fast I did not give them that much thought.

I served in the Air Force repairing advanced avionics and then attended college for electrical engineering. I got a Job directly out of college and worked there for 13 year. In that time I had two PN surgeries with partial success, and worked from home and modified hours, until the PN symptoms were totally disabling and work could no longer accommodate.

My primary pain is with sitting and it is totally debilitating, even with pain meds I can be in so much pain I am vomiting like someone who has had a kick to the testicles. I have not sat through a meal or traveled by plane since 2009,

After three years of searching for a diagnosis, I finally found Dr. Conway in the spring of 2010 he performed both surgeries.

My first surgery in 2010 was a bilateral TIR, this was successful in reducing right side pain but not the left.

In 2012 I had TG surgery on the left side. There were two major issues found.

1. Entrapment of the PN in the falciform process.
2. Scarring of the sacrospinous ligament directly onto the PN.

After the surgery releasing the sacrospinous ligament my pain got worse, this is most likely from the removal of the ligament form the PN.

For two years, multiple nerve injections, and extensive PT there was no response from the nerve. Also the pain was getting worse, in addition to issues with my bowel and bladder slowly getting worse. After two years Dr. Conway declared the TG operation a surgical failure.

This began the search for better pain management Dr. Conway referred me to Brigham and Women's hospital in chestnut hills MA.

Before getting to BW pain clinic, I had tried so many different medications it is hard to keep track.

I discovered I was allergic to Sulfa, Neurontin, and Ketamine.

By 2013 I was using the medications.

Amitryptline 100mg 1 a day
Hydrocodone/acetaminophen 10/325 6-8 pills a day
Lidoderm patch 5% lidocane applied to the scrotum.
Lisinopril 5mg

Later the hydrocodone was increased to oxycodone 15mg 4 times a day.

Once I got to BW morphine sulfate 30mg was added three times a day.
This was the first time I felt my pain was under control.

Once I got the referral to the BW pain clinic From Dr. Conway, I had an initial meeting with the pain clinic I brought ALL of my medical records pertaining to PN. The referral was for the main pain clinic at 850 Boylston St. Chestnut hills MA.

Once I got there the staff started to analyze and enter the data into my medical record for BW I could tell something was going on. First it took THREE hours to get the data in. Not once did the staff complain, they just kept working through it with me getting a better understanding of the extent of diagnostic tests, therapies, and procedures I had gone through to this point.

After that, what I call the "huddle" occurred it must have been at least 5 or 6 Doctors fellows and staff members all gathered and discussed the information for what I think was 5 min. Then the Dr. I was supposed to see for the consult came in, and asked me to explain my journey from start to finish in my own words. After a few questions he explained that the staff present had gone over my information and decided to send me to Dr. Ross who was not in the office at that time. They explained that they felt I was a candidate for a sacral nuerostimulator but Dr. Ross would be the one to perform the surgery. They gave me the introductory Medtronic information and an appointment was made for a consult.

Also I would require a review with a pain psychologist, this was standard procedure for the pain clinic and was required for any type of implant. The appointment was scheduled before I left the office.

In meeting with the pain psychologist was interesting it was basically a screening for a couple of things:

1. Depression from chronic pain
2. How I used Narcotics for pain use
3. My current mobility and quality of life
4. My outlook as for what I would do if the pain was relieved. They were very clear that my pain would not be expected to be gone but the goal was 50% better or more.
5. Evaluate my emotional support network as well as my physical support from friends and family around me.
6. My plans on how to reduce and or remove my opiate use if the pain got better.
7. Evaluate if I had any reservations about implanting a medical device in my body.

This all went well and they described briefly what to expect in the coming weeks and showed my wife and I a demo stimulator and the associated leads.

When my appointment for the consult with Dr. Ross occurred I was greeted by one of his fellows who took in the notes from the meeting. a few minutes I met with Dr. Ross he reviewed my case and did a physical examination. He then described that he would recommend a sacral stimulator this would have the best chance of helping my pain but also potentially help with the bladder and bowel issues.

He went on to explain that the stimulator was technically cleared for the bowel and bladder relief of witch I qualified but that it would also help with the pain in the same way a spinal stimulator would help someone with a chronic back pain.

He then introduced us to Lori the Medtronic rep that works with BW pain center. Lori showed my wife and I examples of the stimulator and the leads used for both the trial and the possible equipment used for the implant. She gave us her contact info and told us to call at anytime if we had questions.

Lori and Dr. Ross said that there was a one week trial and then if that is successful the surgery would be scheduled.

The trial was 2 week later, I showed up to the clinic with no special orders on eating or drinking.

After changing into a jonny the took me into the treatment room.

If you have ever had a PN nerve injection just above the butt into S2-S3 it is very similar.

They clean and prep the area and use a local anesthetic at the lead site. After that they use X-rays to locate the exact position of the nerve ans bone structure.

This is probably the most important part YOU need to be awake and giving feedback to the medical team as to where you feel the stimulation.

I would highly recommend studying the basic anatomy around the PN. I constantly called out every sensation I felt even during the procedure be as specific as possible, this is the critical feedback required ti have a good result.

Once the lead is in the general area they will start gentile stimulation for a few seconds, if you need them to stim it again let them know.

Once the lead is in place, the prep the area and tape everything down to the skin, there are two wires per side. They look similar to a TENS unit's lead.
They applied a pad for grounding in about the location of where the stimulator would be placed. They the helped configure the handheld trial stimulator and showed me how to use it. They sent me home with some pain medication and a follow up appointment in a week.

I could tell it was working even in the car, sitting is my enemy and it is always painful, the stimulator dulled the pain significantly during the ride home.

The stimulator is a very similar sensation to a TENS unit set to a gentle non muscle contracting setting. I had control to make it pulse faster or slower and the general amplitude/voltage.

I spent a week with the trial and my pain meds decreased by 50%, the relief was much better than what I had with pain killers alone. The only this I did not like about it was the management of the wires and being careful with the leads not to get them caught in anything.

Moving and changing position seemed to change the sensation and I quickly figured out what positions were the most comfortable. It took some time for the first day or two but I got the hang of it.

After a week I went back and they took the leads out, it was not bad and i did not even feel the left side, and the right was a quick yelp and it was done.

I told Dr. Ross about the stimulation and how it helped and he said that I would be a candidate for a stimulator implant. He described the surgey and answered any questions. He also told me that after the surgery the stimulator would not be activated until the post-op a week later from the surgery.

We scheduled a preoperative exam and a surgery date. They were about two and three week out from the appointment.

After the stimulator was out the nerve FLARED UP. I was vomiting due to the pain. The pain had not been this bad in years. I called the pain clinic and I saw Dr. Ross the next day. He explained that while it was not common, he did see patients where the relief of the stimulator had readjusted the body to the reduced pain and pulling the trial leads made the pain return to the previous levels without any warning. He prescribed MScontin as a extended release pain killer as well as the Oxycodone I was currently taking. That helped reduce the pain.

After the pre operative exam and a couple of weeks of waiting the day for the surgery came. Typical pre-surgery stuff to get ready the night before and got to the hospital just barely on time. This was scheduled to be a 23hour outpatient surgery with a total surgical time of 90 min.

Once in the pre-surgical room with my wife I was introduced to probably 5 surgical fellows and attending physicians, all were very nice and had obviously read my medical file in detail. They asked some questions and I answered them. I genuinely felt like they were trying to understand the issue and were sympathetic to how much I had gone through to get here.

The surgery was almost the same as the trial except for there was anesthesia administered to help me relax and some pain meds as well. I was fully conscious and trying to just stay relaxed. The major difference was that there was more simulators in the surgical leads than the trial.
As they adjusted the leads I would call out where the sensation was. The leads seemed to cover all of my major pain spots. They them put be totally asleep to implant the stimulator and hook the two up.

I woke up quickly and was in recovery, and Dr. Ross talked briefly with me and said that the lead placement went very well. And that the coverage was very good from how I had described things. The Medtronic rep showed up and gave me a big box and told me that the rest of the Medtronic system was in it, and to bring it with us to the follow up in a week. Also I would note that the nurses were very helpful and were more that happy to give IV Dilaudid whenever you needed it, it was in small doses and did not knock you out. I have to say that was the most comfortable I have ever been in recovery.

I also had a large compression bandage over the side of me that had the implanted stimulator. This had to stay in until the one week post surgical meeting.

After about two hours I was feeling much better, and the ordered me some food. And I told I would be going to a room where I would be spending the night. My wife was with me and was planning to spend the night with me.

BW has a hotel hospital suite called the pavilion, we had debated getting a room there for the night but decided against it deciding a normal hotel room would be fine for one night. We were wrong.

This was my only negative experience so far, they took ma to the other side of day surgery the main difference was a portable TV was in the room. The only thing separating me from everyone else was a curtain. They gave my wife a metal folding chair to sit on. There were other people much worse than me and the moaning and constant care of other people was not conducive to resting. The nursing staff was nice but they just did not have anything else to offer.

We decided that I was either going to go home now or transfer to the pavilion.

I talked to my nurse and asked to be discharged, I quickly performed the necessary steps and was able to go home.

While sore the next day, the recovery was nothing compared to my TG surgery in 2012. I was sore and tender but the meds did a great job of keeping the pain well managed. I was a little less sore each day.

My one week post operative appointment is tomorrow so I will continue documenting once the appointment is done.

9/18/14
I got the 1 week post-op Monday, it is now Thursday, it was a little hard to explain at first so I took some time to get acquainted with the system.

First off some details:
Stimulator type: Medtronic Restore Ultra MRI
Leads: Medtronic Model Number 3888-28 for both sides.

When I met with Dr. Ross they took off the bandages and there were steri-strips over all incisions. Everything looked good. He told me that the compression bandage needed to stay on for a month in order for the scar tissue to fix itself in the proper place against the skin. Dr. Ross also told me to wait for a week or so beofore starting to reduce pain medication.

After that the Medtonic nurse Debbie showed me how to locate and communicate with the stimulator. Next she auto-programed the stimulator and showed me how to use the groups.

Each lead has 4 rings on it and each one of those is an independent lead if you think of it like a TENS device. In total there are 8 leads across the PN allowing there to be a lot of combinations of how to stimulate the nerve.

When she first turned on the nerve it was a BIG jump. As my primary nerve damage/injury is on the scrotum I got a big jolt there. We turned it down and I spent some time acclimating to the stimulator.

The feeling is almost exactly like a TENS device. I spent a couple of months with a TENS unit over my S2 while working, so I am pretty familiar with it.

The other thing that i noticed that the stimulator help with the muscle tone of the anal sphincter immensely. To the point where I have to disable the stimulator to use the bathroom. I would rather have it this way and not have to worry about leakage.

After showing how the stimulator is charged they made an appointment for a follow up and said that if I need help they would fit me in earlier. I also received a print out of how the stimulation groups were setup.

Once I got home and was more relaxed I spent some time with the groups writing down how each of the groups felt. An example of mine were:
I Found this helpful in figuring out what leads are stimulating what areas, I am planning to schedule and appointment with Debbie to try to figure out the best possible groups.

I am finding that my pain meds are already starting to decrease, I am not getting the debilitating intense pain as much, and it is not lasting for hours like it did.

I have not tried sitting yet, I am going to see how much I can get the pain meds down before trying to do that. I am only adjusting my pain meds every 3-4 days and by a small amount at that. This is my 4th time working my pain meds back down and I have found that very slow adjustments are key.


9/21/14
It is Sunday after the turn on and I am definitely able to feel slight changes in the modulation as the healing has happened, this was expected. I have also noticed that in some position with some groups I have been getting shhoing pain across the dorsal section of the penis, I believe this is the vulva for women, someone PM me if i'm wrong. I lowered the setting and made a note of it.

Sleeping has been rough the past few nights, probably due to the adjustment in pain meds and the new sensations.

I slept like a rock for the first few days but now its harder. But no other withdrawal symptoms. Dr. Conway told me that as long as the drugs are not abused and you don't have a craving for them the withdrawal symptoms are minimal. This is the fourth time I have had to drastically cut down the meds and the easiest by far. The only habit I would say is that before I had to use the drugs as a prophylactic to prevent flareups, my phone was set with timers for medication throughout the day.

9/24/2014

I went in today to get the stim adjusted after one week, I called Monday and they fit me in.

I brought the notes with me of how the settings were covering the pain and what I felt would be better. Debbie worked with me for about 30 min. She helped me get a lot better coverage and kept the old settings too. I have only had this a few hours but the coverage is much bigger than before but without going down my leg at all. Both the TENS unit and the trial had some shooting pain down the leg.

The biggest issue I am having right now is remembering to keep taking my pain meds at the proper interval. I used to be watching the clock waiting until I could take another. Now it is more the case that the pain has reduced enough that I forget to take the meds at the right time and have to play catch up with the meds. I am planning to keep the MsContin for while and see how things go after the initial month is done and I can go back to most normal stuff.

Officially, you are not supposed to drive with the stimulator on, But (cough) dri (cough) ving is better. I flat out lied and told my wife it was off, then I told her 45 min in on the 2.5 hour drive in. I received "The Look", I probably would have gotten more, but my daughter was in the back seat.

I am almost totally off of the Oxycodone as a scheduled medication, I am now using it only when i need to catch up. And I am now on just the MsContin/ morphine sulfate extended release. I would say my opiates have gone down 40% In just two weeks. There have been no dependency side effects, the pain get worse and I realize I forgot a dose.

I go back in 2 weeks for the final follow, up and then every 3 months for pain medications and follow ups.

9/29/2014

The new settings are helping but I am noticing now some very slight reaction on my left leg. After I make an adjustment, it goes away after a mew min. it feels like the entire leg is sightly contracted. It not huge but just enough to know that I deed a little more tweaks to the system in two weeks.

I have to shut it off before bed and I am finally starting to sleep better. Going out is still uncomfortable between the nerve and the compression bandage. After church, there was a hornet in the car today that I had to chase for five min due to it kept hiding under the backseat upholstery. I was sore today as on some PN but not completely flared up the stimulator held it back to a uncomfortable level until I could take an extra Oxycodone mid after noon. This is the first time in a week that I have had to take a second Oxycodone in a day.

9/30/2014

Yesterday I turned off the stimulator and forgot to turn it back on, I was lying in bed so I was fairly comfortable. I got up and went downstairs, and WHAM the PN flares up just like that, a kick in the nuts. I was coming downstairs to get some lunch, but that now was not going to happen, but if I eat while this type of pain is going on I throw it back up almost immediately.

After I got the stimulator back on it subsided quickly and I took extra pain medication that I am now at libery to take as needed and went back to bed. I was a lot better in about 30 min. The stimulator helps immensely, I can feel at times that the nerve is trying to flare, up but it can not. The stimulator seems to put almost what I would describe as a barrier to the pain,

Today I am feeling much better.

10/7/2014
First the good news:
Today is the one month mark of the stimulator I get to not have to have the compression bandage on except when bending or any over stretching or reaching moments. I am defiantly feeling the pain less, with a 50% reduction of pain meds on a good day. I am able to do more little things like making breakfast, and be around the house downstairs more than I used to prior to the stimulator. I also notice that eh opiates have little more "kick" than they used to that means I can take even less, I am cutting the immediate release oxy in half now, and primarily relying on the MScontin as the primary pain meds.

Now the not so Good:
Again I forgot to turn it On until 10:30, But I was watching TV in a weird position and it happened to piss off the nerve. So I turned it on but I spent the rest of the day chasing the pain trying to get it under control I went to bed 3 hours early nad was just adding pain meds until it was back under control. This was also the first night I slept with the stim on.

This morning it it back to normal, before the stim that would have been a 3 day recovery.

10/23/2014

I just went back in today for the one month follow up. It was an interesting meeting.
I can now take off the compression bandage around my chest. That is a relief.

Before I scare you with the details, there is sometimes a temporary reduction in the stimulator after the surgery. The body has healed without a lot of scarring, and will need more time to scar and "lock down" the leads. I learned that this was something that can happen and is more common in younger people. It should get better over time with more consistent stimulation. But, in my case, this adds another 8 weeks to my recovery.

I had very good reduction in pain for the first 3 weeks, and was able to cut back on my pain meds by about 50%. Then it started to taper off as the swelling and internal stitches dissolved. It became totally intermittent last week it was hard to find a position to get a good connection.

Dr. Ross said that the my body has healed from the surgery, but it has not yet scarred the system totally in place and that could take another 7-8 weeks to complete. The stimulation should get better over time. So I am at the post op weight restriction of 5 pounds with no bending, lifting, or stretching until they tell me. I go back in three weeks.

Dr. Ross also put me back on the pain meds until the system takes effect. He has been the best pain physician I have ever had, he has an understanding of the need for pain relief of his patients. He told me that after being on opiates for so long that the body was going to take a long time to get everything working right and that they, the BW pain clinic, would help me with the process. This was going to take months and not weeks to get things worked out and that I should not worry about it.

A positive is that I am able to putter around the house in the morning for 1 -2 hours now. This is much more than I could before the stimulator. This is even with the stimulator working sporadically, it still seems to help some.

Time will tell, the stimulator is still helping right now, just not as much as it could have.

While I was hoping for a quick solution, Dr. Ross seems to have a very good handle on things, and how to proceed. I think the stimulator could certainly help in the 40 - 50% area of pain reduction. It is already a big help.

I have been asked if I would rather have this or a pain pump. Right now I can not say for sure. If in three months I still needed the level of opiates that I need now, I would go for having BOTH systems. This way I could use the stimulation, to keep the pain down and have the ability of t he pump to keep the pain medication consistent and control flare ups faster.

11/16/2014

First a big thanks to everyone for their support, I am grateful for all of questions and encouragements.

I had a bit of a step back over the past few weeks, As the stimulator settled in I was getting less and less help from it, my opiates went right back to where they were, Dr. Ross actual encouraged me to go back on them and wait until the stimulator has more time to settle in. This is typically up to,12 weeks for the scarring to fully finish.

What I mean from this, is a change in stimulation and that as I moved I would get jolt of stimulation as I moved, and it was very hard to get a good consistent coverage without it locking up my leg. If you have ever had a TENS unit and the pads were loose, and when you touched them you got a jolt. The sensation is exactly like that.

Now over the past few days I have noticed that I am having a better connection more often, also the incision point on by side is starting to hurt again YEA ,

This is good as it means that the skin and nerves damaged in the incision are reconnecting, and that is one of the last things to heal.

12/14/2014

I have not posted much, as a lot has been going on. I am now using 50mcg Fentanyl patches with oxycodone several times a day.

I have found that the stimulator has helped much more functionally than for acute pain. It has been 3 months now and the stimulation is much more consistent.

The hypersensitivity, motor control, bowel, and bladder issues are all substantially better. This may be a good solution for someone with PGAD as the primary symptom.

I have to charge the stim once a week for about two hours, I just find a comfortable position and watch a movie in bed.

The stimulator has definitely helped me get the bowel and bladder function back to normal, and it helps with the pain, but I would not give anyone the expectation that they will be drug free if their PN is already a round the clock pain source like mine.

As always feel free to PM me if you have any questions.

What a journey you have been on. Did you ever consider the pain pump? I have been through 3 unsuccessful nerve decompression surgeries. I will be seeing Dr.David Schultz.here in Mn. I am hoping for a pain pump rather than the stimulator. I am so tired of the tens unit that is on every waking moment, although it does soothe the sciatic nerve some. I am 77 and have been in horrible pain for 7 years. Sitting is totally out. I had been on oxycontin and norco for 6 years. I have been off of the opiods now since June 8th of this year. I did not come off of it slowly, it was June 9th and all was taken away. I about went crazy.
The consult will be the 16th of Oct.with Dr. Schultz. He was recommended by Dr.Joshua Prager. He may have another choice for me rather than the pain pump. I just want for this pain to be less, gone, kaput, just need relief, no matter how.