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

[kathyd]

Thank you Carl for your story.. You have taught us a lot about a proper and effective trial, and newest methods for trials, and pump implants
I am so happy you found the right doctors and that things are progressing so well for you! The right doctor is essential in this process.

I have had a pain pump since 2013, with various meds tried, but have never received significant relief.
I had my pump trial in June 2013, and then a pump implant a few weeks later.
I'm going to call my first pain pump nurse to confirm exactly how my trial was done.

I've had so many procedures, i can't remember the exact details of my trial, but I was admitted our local hospital. We chose a local doctor whom we weren't sure was savvy enough, but my hubby had driven me to so many procedures since 2009, when my sitting pain gradually began, that he was tired, so we agreed to the local doctor with much apprehension on my part!
Anyway.. I remember at the hospital, ( I think the trial was this: ) the doctor simply injected me with the meds he chose (probably morphine and another med) and then had me sit on the hospital bed for a split second or so!! I got up quickly, but he said that it was enough of a test!
I was shocked..
It was def not long enough to know if I could sit.. Then he had me walk around the room for a few minutes, (useless as walking was not a problem for me anyway!) He then told me I passed!
After hearing the story of another online friend of mine, who was able to sit on various seats in the clinic during her trial, I knew my trial was
inadequate. I voiced my concerns to my hubby, but not being the one in pain, he said to give it all a chance. I was desperate for any relief so I went along with it. The Doctor assured me all was well,but in my gut...I didn't trust him.
A short time later, I was implanted with a pain pump. Since then I've tired many medicine combos. I had a kind pump nurse who came to my home for refills, but I saw that she too was unfamiliar with pelvic pain. (so frustrating.)
I soon requested the combo that helped my friend, but it did nothing to numb my pain. I remember being up to about 16mgs of bupivicaine, along with other meds, but I did not feel numb!
I must admit i didn't push the bolus too often, as I feared both constipation and urinary hesitancy ( the latter-- symptoms 'Ive had on and off since my pain ordeal began).
It took me a long time to get my laxative regimen set up, but I finally settled this year on about 1 Phillips M.O.M. caplet at bedtime.
This is a bit much,so I now cut off a bit of the tablet.
( My problem is tight spasmed pelvic floor muscles, so pooping too much worsens it, and then causes me to have more trouble peeing...vicious cycle.
This year I had some pain improvement through the work of a savvy Pt and have gained a much needed 25lbs.
Now I do hit the bolus more, but not the full 4 times daily which I am allowed.. I must try! however, I feel little to no relief when I hit it.
Due to my weight gain the pump can be moved to a more comfortable place.
It's currently right over my bladder causing more bladder irritation and hesitancy,etc.. It was done by a general surgeon instead of my pain doctor. I think the whole procedure was done incorrectly.
After reading about your trial and about the new and innovative ways the pumps are being placed and the trials are being done, I'm thinking
about getting it moved and re-done- both the pump itself and the leads. But this time, I would make sure I have the best doctor and hospital before doing a newtrial and finding outif I'm truly a candidate.
I have severe sitting pain and cannot sit directly on any surface. I kneel on a cushion concoction to dine out ( as of this year) due to the good work of my PT. Driving s still most painful, despite a toilet seat like cushion hubby and I designed, so I don't do it often lately.
Anyway, I have a lot to think about and would really appreciate any of your thoughts about what I've told you, if/when you have time,
I would love to hear of the right doctors/hospitals to consider for this procedure. I live in the NJ/ NY area about 4-5 hours from Boston. My son attends college there.
Thanks so much and my continued wishes and prayers for your comfort and healing.

[blightcp]

Just an update on how things are going with the pump.

The past month has been crazy my wife has surgery in Boston and the hotel bookings were messed up so I was driving 2 hours each way for three days and staying 6-7 hours on my feet. After that it was 2 ER visits, 3 unscheduled doctors appointments, chest Xray, CT scans.

But everything is and was OK, it was just her symptoms from the surgery were not "normal".

In the midst of that I dropped into my former military mode and just moved forward through the pain. I have found I can do this for about 3-4 days before the nerve just shuts me down.

It took about a week to recover from that, laying on my right side and 2-3 occurrences of extra pain meds on top of the pump.

Now that that is over and I am back to my normal routine.

The pump is doing great!!! It has been just over a year and we are finally at the point where I don't have to wake up in the middle of the night to take meds!!!

I have to take the opiate 12 hour pain meds as son as I get up, but I am getting some solid sleep for a change.

The pump is finally starting to get "dialed in", it has slowly been getting better, and I am waiting to adjust the dose when I go in for refills. I usually just emai Dr. Ross with an update a month before the refill appointment and he adjusts the dose from there.

Hopefully the next few increases may get me off oral pain killers completely.

As for function, I can sit on the end of the bed for a moment and driving is getting better but still no real sitting tolerance other than the car. But I can run a mile on the elliptical in PT every week, the nice thing with that is that I am able to be stretched out immediately after the run so that helps a lot. I have not tried running due to the impact I am 99% sure it will piss off the nerve.

I go back for the refill in 3 weeks, and I am looking forward to where I am a couple of weeks after that.

Feel free to PM me if you have any questions.

Carl

[April]

Thanks so much for the update, Carl. It sounds like the pain pump is working really well. And it's great that you managed to survive all that travel, although it sounds like it was difficult.

April

[egley]

Hi Carl,

Glad to hear of your continued success with your pain pump, and thank you for shining light on this topic and all your PMs to answer my numerous questions!
As you know from our PMs, I am thinking of having my catheter placed the same as yours. My pain management doc has spoken with Dr. Ross and understands what he did. So, things are ready to go. I just have to make the final decision about this. After my disaster with the neuro-stim surgery, I am very, very reluctant to submit again to these invasions into my spine!
For those who are not privy to our PMs, my catheter is placed according to Medtronic specifications, which is, 1) catheter inserted between L4/L5, 2) catheter points up. This is my current setup.

This setup does not give me much relief from sitting pain.
It does, however, provide total relief from the muscle spasms after my neuro-stim implant surgery.
But that is almost entirely due to the prialt - opiates did not help for the muscle spasms.
The prialt did help a bit on the sitting pain, but not much. I took that to mean that not much of the prialt was making it down to the pudendal nerve area after reading Carl's results and hearing how his placement differed from mine.
We had tried bipuvocaine in my pump also, but I could not feel any difference whatsoever. Carl's results with bipuvocaine were so vastly different from mine that is seems inescapable NOT to conclude the placement is key. But to be totally sure I would need to find what kind of doses of bipuvocaine I was getting.

Your catheter points down, of that much I am sure. But is the tip of the catheter also pushed down from the entry point?
I recall some mention about the flow rate also. Yours is significantly higher than mine, as I recall. After I push for a bolus it takes 20 minutes before my pump is finished injecting (at my current settings) - your injection time was much shorter, no?.
It leaves me wondering if that is how the bipuvocaine makes it down to the pudendal nerve area - it is essentially 'blown' down to S1/S2 by the injection velocity out of the pump?
In other words, if the catheter tip were already in that (S1/S2) area, you might not need the high injection velocity?

Well, I am thinking of at least having my catheter moved on a trial basis in the hospital this summer.
My pain doc said we can try all kinds of mixes during this time.
If the sitting pain is not helped I guess I will have to move on to more seriously considering surgery.

The prialt is another difference. I would want to keep it in the pump in the hopes that it will still provide muscle spasm relief after moving the catheter. But who knows? It has been years since adding the prialt, perhaps the nerves have healed further during this time? They did manage to improve after the nuero-stim removal, so it is not unreasonable to expect further improvement. Then I could not worry about this added malady, and focus purely on the PN pain.

Prial is not an opiate, and in my experience, it is a very strong pain reliever. And there's no addiction.
It is very expensive, but Medicare pays for it so no hassles from ins. co's.
But, as with any new drug, I'm concerned about what it is doing to my body.
It is actually derived from snail venom, so I guess it's no surprise it has a huge effect on nerves.
But how much research do they do to insure a drug does not have some nasty long term effects?
After I started on it, I had strong reactions to smells. So bad, I had to get some fresh air.
I had a particularly strong reaction to the dish soap we were using.
And the perfume my wife wore! My wife was not happy!
But these went away with time.

I had high hopes for prialt, but I find that it gives me serious brain fog - much more so than the opiates.
I don't think I would have serious brain fog with bipuvocaine, at least I hope not.
We shall see... Got to go...

Thanks!
Skip

[egley]

Sorry, forgot one question Carl.

You mention not being able to sit comfortably, but you can drive without any issues (my paraphrasing).
So, even with your current setup you cannot sit without pain?

Can you please clear this up?

Thanks!
Skip

[river133]

Pain pump refill on the 12th of May at MAPS, I had an appointment to see the pelvic floor therapist prior .. I was quite impressed.. She told me that all she treats is pudendal .I was not doing myself any favors by NOT SITTING. Wow, I have the piriformus stretches and walking backwards for 5 min. a day until my next appointment.. Of course there is the ice she recommends. Bought a cold pac
by Chatanooga.Great size and stays cold longer. Could have gotten it cheaper on line.. I have been through so many these past 8 years..
. She said people come to her that have the pump and do the therapy as well. I asked her if anyone was able to get off of the pump with the therapy.. She hesitated and said a few.. She said she only treats from the waist to the top of the legs. Piraformas , sciatic, etc. as we all know.. She knew of course that I had surgery with Dr. Antalok... By the way, he has not enjoyed a good reputation along with his peers. They all disagree with his theories. From Dr. Shultz on down. Dr. Schultz is the Dr. that implanted my pump... It is the last time I laid eyes on him,, from there on in it is CNPs. Oh, yes and she suggested to purchace a squatty poty. The pain pump is helping the wretched pain. I have bupivican and morphine. I am trying to sit more , but the flares start up and it is like day 1. This is a work in progress...
. I had a TNR 2.5 years ago and it was not a success. I kept thinking I was doing something wrong by not excercising enough because the pain in my knee was not decreasing , My right foot turns to the right since surgery. My balance is off .I feel as though my whole leg is not aligned correctly...because it is not. I just want the OD to verify. I asked today if there is compensation for situations as these.... We will see if that gets their attention..... And so it goes.... Ellie

[nyt]

Glad to hear you have found a PT that you are impressed with. I hope she will be able to bring you improvement, decreased pain and increased functionality. I am curious though why did she think you weren't doing yourself any favors by not sitting?

[river133]

By keeping the nerves tight I assume, we will go through that next time. None of us have ever sat unwittingly. I believe I will never be able to sit comfortably. Did I say that all she treats is pudendal? Think so. Will report after next appointment, will get the answer to why not sit. Let's google it!