Story of Pain pump at L5 Retrgrade to S1/S2 update 6 MAY 16

[blightcp]

This topic will document my experience with a anesthetic pain pump.

Last Update 3/29/16: general staus update and some details on how the pump's catheter was placed and drug amounts.


This is the follow up procedure to my nerostimulator implant in Sep 2014, I documented that over a few months on the topic below.
http://www.pudendalhope.info/forum/view ... =33&t=6188
I will try to document this in a similar fashion as the stimulator.

Before I get to the trial, my best advice to anyone with PN is to memorize the pudendal anatomy as best as you can, this site has lots of reference material on the home page. I have found the doctors will take what you are saying much better if you can speak their language or earnestly try to. If you get it wrong they will tell you, they will appreciate your efforts, and it will help them understand that you are an active participant in the process and not just "following along" like most patients.

Also, study your previous procedures get the records and notes for yourselves, I have 400 pages of medical notes for just my PN stuff. I am the ONLY one who knows it all, if they misstate anything let them know politely ,remind them of details that are relevant especially any bad reactions or procedures that have failed din the past.

I they are trying to repeat a procedure that did not work, like nerve blocks, ask how this procedure is different. I found out that my old pain clinic was jabbing the nerve constantly and blasting the nerve with the injection. When Dr. Ross did the injection it was, much less painful and had the same effect.

Understand what is going on, PN is not common so make sure YOU know what is going on.

OK, now to the pain pump.

A Brief History

In 2012, my second surgery they found the PN entrapped in one place, and adhered to the sacrospinous ligament. Basically the damage was done, and after 2 years of intense therapy and 17 months of disability, I have little to no recovery.

I have been in major chronic pain and taking opiates around the clock since 2010, between the stimulator, PT, and opiates nothing was managing my pain and giving me a decent quality of life, I spend 20 hours a day in bed.

I am totally unable to sit since early 2010. A hard surface feels like my testicles are being squished when they are not. A soft surface will make the pain slowly creep up until I have so strong a sensation that I MUST MOVE. Either way, that would flare me up for the rest of the day. Driving is easier as the car's seats are bolted to the floor so I can use my left leg to lift up my left side to prevent pressure to that area.

The two primary Doctors I see are:
Dr. Ross, is the director at Brigham and Womens pain clinic in Boston, MA
Dr. Vaninetti, Fellow of Dr. Ross

Dr. Ross has a small army of fellows, I have met about 7. This is good in my opinion, he can delegate tasks and get more done. They are all very good and focused on PN, they have all listened to me and understand the issues. the appointments are close together usually 2-3 weeks. I always talk to the fellows first and meet briefly with Dr. Ross, he IS quick but has taken the time for questions. Make sure you have question written down.

The fellows always seem to have read my files, and have always acted like the care, they have never discounted my opinion like with other pain clinics.

The event that brought about the pain pump was that my opiate tolerance was getting worse. I could not tolerate the Fentanyl patches and I was frustrated with walking a tightrope of pain and being able to function. Is was so narrow I would be incapacitated in pain if I missed a dose by two hours.

Dr. Ross said there were two options open:

1. subaxone a different type of pain killer like methadone
2. pain pump

After I had investigated both, I decided to go with the pain pump. Dr. Ross performed a single pain injection to confirm that the procedure worked and "OKed" the trial. He also started the subaxaone process as a method of weaning off of pain killers.

At the next appointment he presented two options for the pain pump.

The first is the standard "pain pump" that is put in the intrathecal area of the spine where the spinal fluid is, it would be located up in the traditional location but pointed down towards the sacral vertebra instead of the lumbar.

The second option was to have the pump deliver a local anesthetic at the S2 area, this had the advantage of not having to worry about building a tolerance to opiate medication and that it would lonely affect the pudendal nerve and possibly some transient numbness on the legs.

This is the same pump used in the spine is put in the pudendal canal using different medication, so that the pudendal nerve has a local numbing medication constantly placed around it.

After the details were worked out I was scheduled for the trial, due to insurance issues and his avalibility I was scheduled for the trial the next day.

3/16/15

My trial is tomorrow 3/17/15 and it requires a 3 day hospital impatient stay, so I may not get to updates for a couple of days. The surgery is scheduled for 4:00 PM so my whole day is going to be waiting.

As always any prayers are welcome, and I will keep you posted.

The place holders below are to allow the description of the process to be in one easy to read location, I will use them as I document things.

3/17/15 Surgery day

I got into my hospital room and it is bueatful, I am on the cardiac ward, due to the epidural, and I am hooked up to a IV, ECG, and an O2.

The check my BP and O2 every 2 hours.

So far the pain is minimal, I do press the button every hour or so but the pain is way down.

The trial surgery was easy, I think, I don't remember a thing I was determined to give accurate feeling and feedback to the doctors, but I have no idea how well that worked.

The epidural is placed inside the "butt crack" way below S6 this is going into the lower bowel of the pudendal canal. It is not uncomfortable, the taping of the epidural up the back is the most annoying part.

Tired and my back is sore but other than that I am OK. My wife is here with me, my daughter is with my brother at home, this is sad but I get out of the hose so little that we almost consider this a date.

3/18/2015 Hospital day 2

I was worried about the numbness, but it is really small I can just barely tell that there is a difference from the left and right side.

6AM
I decided to NOT take my 15mg of Oxycodone, my pain is minimal so Lets see how long I can go without it.
I did take my MScontin 30mg, as a way to prevent any withdrawal symptoms.

The next morning I tried walking around the nurse said I could so I carefully started to go out. Within a minute or two Dr, Ross's fellow showed up and I kinda and got in trouble, apparently the epidural could cause loss of sensation in the legs. He asked that I stay in the room until he checked with Dr. Ross.

10AM
I still decided not to take Oxycodone that is 2 doses missed I should be in a fetal position unable to move and in agony. But I feel fine, WOW this is great!

Later that day I tried sitting...yes sitting I was ok for 2 min before the first twinge and pain appeared, I got up and hit the button, and that seemed to take care of it within 90 seconds.

2PM
Declined oxy for the third time !
I did take Mscontin on schedule.

I broke out my laptop and was able to post a little bit.
Dr. Ross answered and said that I could ambulate outside my room. Freedom!!, I am now one of those guys walking around with the IV rack, Don't worry I actually put on some old sweat shorts. I immediately get to the mini kitchen on the floor and find a fresh pot of COFFEE, as I walk back past the nurses office I do my best impression of Gollum from lord of the rings "Precious, my precious COFFEE.." That got a good laugh..

I continued to have a small amount of PN pain that the bolus keeps at bay, I was pressing the button every hours or so.

At about 5PM during the shift change for the nurses I realized that I had pressed the button 26 times in the first day, any time I felt the smallest twinge of pain. That evening they upped the dosage to 2ml an hour.

6PM
Declined oxy for the fourth time !

The increased dose reduced the need to push the button as much and allowed me to rest a little more.

8PM
I also got to Skype with my daughter before bed. If you have kids, I recommend that you setup a way to Skype and talk to them, it helps a lot with their anxiety over the surgery to SEE that you are OK. Just make sure that you set up the Skype before going to the hospital, that way there are less problems getting it up and running.

10PM
Declined oxy for the fifth time !
Due to the increase they had to constantly check for any numbness, BP and O2. I did not sleep much.

2AM
Declined oxy for the sixth time !
Finally got some sleep from 2-6AM

3/19/2015 Hospital day 2

7AM
I did not sleep well... Got some breakfast and a cup of coffee, listened to some music. I am still at a pain level of 2, I feel great. I could seriously run a mile if it was not for the epidural. The pain has been so bad for so long that I had forgotten what it was to not feel pain.

9AM
The nurses wanted to ask me some question about the stimulator and I was happy to answer them, we found out that charging my device did not effect the ECG.

Dr. Vaninetti comes by while I am walking and taking with the nurses and is beaming with a smile, he looks at me and says things are going great and that there is more than enough proof that this should work, he explains that the pump is more effective than the trial and that the relief I am getting with the epidural is great.

I am going home a day early. Dr. Vaninetti says to call the office and schedule a preop and to ask for a surgical date. He then starts my discharge papers.

He also says that before I leave to start back up on all of the pain meds, in about 10 hours the pain would be back in full force.

2PM
My family shows up and I get discharged, I take a min to go to medical records and get a copy of surgical notes. They give them to me while I wait.

5PM
I am home, we just missed the afternoon traffic. It nice to be home. I stil feel great and my daughter is estactic that she gets her "old papa" back for a few hours. It broke my heart to hear her say that but I hope that this will change soon.

Lessons learned:

1. If you are a guy shave your chest and back. The epidural is snaked up your entire back up to your shoulder. This is in case you pull it there is plenty to rip until it actually get to the epidural. Taking off the entire bandage is a one shot waxing of you back.

2. You upper chest too, the 3M red dot leads stick with adhesive that takes everything with it and leaves a nasty sticky square that takes a couple days to come off. I found mineral oil work well to unstick it.

3. Underwear, You can wear underwear or lose shorts. Pack 5 or 6 clean pairs, the surgical site does ooze and bleed a little so you will need to change the shorts once or twice a day. If you don't have them buy a pair of boxers that are not too flashy. This helped me feel more comfortable and don't feel exposed while walking. I don't know about sports bras but I think you could get away with those too.

4. Entertainment, bring something to keep you busy. I felt like a million bucks and I could not do anything. I am glad I had my laptop with games on it.

Now I am waiting for the confirmation of a pre-op and a surgical trial.

[blightcp]

3/23/15

I have been home for a couple of days and the pain is a lot worse after getting some relief. I have had to take some extra pain meds to "breakthrough" the pain.

I am still waiting on the surgical date, hopefully I will get it today.

I had the pre-op today. They are planning to just use the bupivacaine to start with as it worked so well for that. These was not much to discuss. It is a typical intracathial pain pump except that is is at S2. It will take a few days for the medicine to work at full strength, and then I can start tapering off the pain meds as much as possible.

4/13/15

Tomorrow is the big day, my wife was been sick and we have quarantined the house for the past week just to keep me from catching it. So far all I have had to deal with is allergies, I am taking just vitamin c and zinc lozenges, that's it. It seems to be working, and I am almost in the clear, as long as everything stays this way I am in good shape for tomorrow.

So I got the call from registration and they said I was going to spend another night in the recovery ward, arg.... 50 people all stuck in a room with curtains between them, I am NOT doing that again.

Brigham and women have a hotel pavilion floor. Its basically a 4 star hotel and a hospital combined. I booked a room there for the night, it is $325 a night but it will be worth it for a room, I get meals for free but there would be a room service charge for my wife. I will try to take some pictures.

Almost there!!!

4/15/14

Wow, what a wild couple of days, first the surgery got canceled as I was in the car and then, two hours later, it was back on. Insurance issues were the big hold up.

Most of the Pre op went well but about 30 min before surgery the PN flared up and there was nothing I could do to stop the pain, I was literally in tears. The anesthesia guys when they say me gave me the good stuff, sigh... much better

I wake up faster than most people from anesthesia, and I only nod off once or twice before I am fully awake. I think this is why I cant stand the recovery area it is too busy and noisy.

I am glad I called and got the pavilion room @ $325 a night, it was worth it. First, you have to push the special intercom button to get to the floor. Soft cotton robe instead of a johnny, stocked mini fridge, fine china, (free for me not my wife) private chef and kitchen, microwave, and coffee maker. Dorothy was able to go up during surgery to the private waiting area with Starbucks coffee and snacks. It was all pretty nice, everything was on par with a really good business travel setup.

This also counts as a medical "travel expense" on the taxes too, if you look at it from the perspective of you spouse staying the night at a hotel it is still more but much more comfortable for the both of you.

It is also quiet, like almost pin drop quiet in you room, it was awesome after going in the pre-op area. The nurses were great, the response time was basically instant, they could small talk a little, and they were not strung out like on the cardiac step down I was on two weeks ago for the trial. They say you don't get "better" care, but in my opinion you do, the staff is much faster to respond and more helpful. And that makes little things much easier. I am not complaining about the service from two weeks ago it was great, but the pavilion is something totally different.

Ok, I got all that done , now for the details. The pump details are:

Code: Select all

Sergon:                              Dr. Edgar Ross at Brigham and Women's in Boston MA.
Device:                              Syncromed II by Medtronic 8637-40 40ml
Catheter:                           8780
Catheter Length:                27.9cm
Spinal segment length:       86.4cm
Spinal segment implanted: 48.4           
Settings:                            1.999mg a day of Bupivicane
PCA:                                  Yes, a handheld device with a bolus butting and a patient log built in.
PCA Bolus Setting:              0.100mg 
PCA lockout Time:              4 hours                          
Drugs used:                        Bupivacaine 10mg/ml
Estimated fill duration: 6 months If it stays just Bupivacaine, I was surprised at that!! 
Pump will sound an alarm when it needs a refill.
Pump lifetime:              6 years
Audible alert:                Yes, diagnostic codes are read by patient PCA device
Location:                      I have the pump installed on my right side under my ribcage.  
                                    If you draw a line straight down from you nipple,
                                    that would be where round part goes and it points straight back 

If I missed any details just ask and I will add them.

I am more sore than from the stimulator, the pump is bigger and the front of the stomach is much more sensitive than the back. I have to wear a compression bandage for the next few weeks and I cant shower yet.
The incision site in the back at S2 is not that bad at all, still sore.

I am already in not as much pudendal pain, and the effects is supposed to increase over the next few days. I can still feel some of what I would call nerve motor sensation like a brief spell of nausea, or felling of something being in there but much reduced. It is still very early in the process, so I am far from having this "dialed in". I a, still taking my pain meds at least until the incision site is better.

I have a follow up Monday, and Thursday I think. Monday is because I am in for the psychiatric visit. Thursday is the official follow up.

Dr. Ross also told me they had another patient with PN that they were having a trial for and that I was the guinea pig. I hope it help them as much as it looks like it is going to help me.

Ok, I will add some more later, but I need a break..

[blightcp]

4/24/2015

Sorry about the delay, I just got the post op Monday and was not feeling well due to a sinus cold.

The Pump work Great!!

Granted it is not perfect yet but it is so much better than before. The extreme testicular pain is still there, but MUCH MUCH less than before. It is more like a twinge in your back that tell you not to do something. I have been able to start to cut down on meds and I have only had one nerve flare up in a week. Compared to every day that is huge.

When I was in the office they said that the had done another pudendal trial, and that my results were the motivation to try it. I hope it helps someone as much as it has helped me.

Dr. Ross bumped up the pump 10% and activated bolous, I now have the button!! I can use it once every 6 hors to zap the pain when it pops up. It works in 45 - 60 seconds, I timed it. I it so much better than popping pills and the only side effect is my leg and groin get warm.

I go back un three weeks to get another adjustment to the pump and we just keep tweaking it.

As always feel free to PM me or comment below.


The only side effect I have had is that when I wake up there is significant numbness in my left inner thigh around to my buttocks. It can also run down the leg to my foot. It goes away withing a hour of getting up but can make walking a little weird. I will take numbness any day over the pain.

[blightcp]

Placeholder #3

[blightcp]

Placeholder #4

[blightcp]

Placeholder #5

[Violet M]

Wishing you all the best with your trial and will keep you in my prayers. I'm looking forward to following your story.

Violet

[Karyn]

Best wishes Carl!
I'll be keeping you in my thoughts and sending healing energy your way.
Looking forward to hearing how you're doing - feel better soon!
Hugs,
Karyn

[river133]

Praying for you Carl. I will be following your reports closely.

[LottaNerve]

I am sooo hopeful and happy for you!!! Thanks for letting me know about this! If you have good results with your surgery I will show my doctor and see if it would be indicated for me! The pump/anesthetic in my spinal canal has been so effective it changed my life, but this sounds even better!! I would love to get rid of the remaining pain I do have!!