Re: Story of Pain pump at L5 Retrgrade to S1/S2 update MAR 1
Posted: Sat Apr 02, 2016 6:47 am
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.
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.