Health Organization for Pudendal Education

Hi Folks
I am wondering if anyone else on these boards has traveled to see Dr Prager in LA. Cali for pain treatment?
I am considering the long trip across the country as , I have not made any significant progress with the pain docs locally. They are not experienced enough and are really guessing at how to dose me, as each day I live in severe pain and deal with the side effects of my meds.
I feel I need someone of Dr Prager's expertise to check me out etc.
I was very heartened by Lotta Nerves' story of success with him.
The trip however is a big gamble for me as we are all different. I also know how painful the long plane trip would be etc.

Just wondered if there were any more Dr Prager success stories? If so could you pls post..
Thx so much!

StantonHicks in Ohio would be much closer to you. He and Prager do have different approaches. My understanding is Stanton Hicks doesn't use morphine in an intrathecal pain pump because it is associated with granulomas forming. (See Larry's story under personal stories in the L menu of the home page.) I think lottanerve said she has morphine in her pump. I can't say which approach is better - just pointing out the difference.
http://www.ncbi.nlm.nih.gov/m/pubmed/9588567/
Rare occurrence but people should be aware that it can happen.


Violet

Thx Violet
For the doctor info and warning. Will keep dr Hicks in mind.
That is something I brought to my pump nurse's attention early on . She is very vigilant
Im currently not using morphine (other drugs instead) and am I am re-thinking my decision about the pump
Docs in my area are in -experienced at dosing it, so it has thus far been more harmful in some ways than helpful (IMH0)
To my knowledge, Dr Prager is only doc in USA with experience in dosing a pump for a PN/IC patients.
or CRPS.. but I could be wrong.
Thx again.
Kathy

Hi I thought I would chime in here and let you know that morphine is on the lower side in my medication mixture.
The meds in my pump are:
bupivacaine (same as marcaine) 20 mg - this is the upper limit because of the granuloma concern)
morphine 5 mg
clonidine 250 mcg

hope that is helpful/of interest.
- Sharon

Lottanerve, I was under the impression that morphine was drug of concern with intrathecal pain pumps and granulomas. http://www.ncbi.nlm.nih.gov/pubmed/17285949
It looks like it is pretty uncommon though, which is good.

Violet

Violet, it is really good that you bring up these issues. There are so many risks in treatments for our kind of pain. It is something each individual has to come to grips with and we are all different. What works for one person does not necessarily work for another.

I remember Larry’s story and his success with ketamine. It is really sad that he developed a granuloma from the pain pump, and my heart goes out to him. I can't say I'm not scared of developing a granuloma too. It’s not fair, is it? It seems like every option we have for treating pelvic pain has a downside.

How did I end up with a pain pump anyway? I had the chance today to reflect on that...
How well I remember... there was a place of desperation, desolation and hopelessness that I reached, that many of us get to... (those of you reading this may know what I’m talking about, or you wouldn't be scanning the HOPE forums on a lovely three-day holiday)

There is a moment when each of us has to make a choice... are you going to keep trying? Because you get to a point -- whether its the first PT session, the first nerve block, first surgery, or even a neurostimulator or pain pump -- where the risk of NOT doing it feels worse than the risk of going ahead. At least it did for me. I was bedridden, in horrible pain, couldn't sit, stand or walk. Days and nights merged together and I spent them with my pelvis elevated and packed in ice, with a heating pad on my abdomen. My friends were long gone, and I couldn’t even truly “be” with my family anymore... they were just hazy forms that brought me ice packs and medications. I really didn't want to go on.

Fortunately, there was still a spark in me that refused to give up. However, in order to go forward, I had to accept something that had previously been unacceptable. And that was having a foreign object implanted in my body, with all the risks inherent in that.

The fact that there was a trial helped. I could do something temporary to see if it even worked. And the amazing, incredible relief I felt during that trial was something I’ll never forget. It was like the sun came back into my life. So from then on, going forward with the pump was a no-brainer.

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Violet, I was glad to read the study you posted: "At West Virginia University Hospital, we have implanted more than 700 intrathecal drug delivery systems (IT-DDS) since 1989, and have encountered two cases of granulomatous masses developing at the tip of the intrathecal catheter." http://www.ncbi.nlm.nih.gov/pubmed/17285949

That’s not bad, right? I googled a bit more and read a study by the NIH that discussed three patients who developed the granulomas who were on much higher dosages of morphine than I am. “These three patients were receiving high doses of morphine to control their pain (25 mg/d, 28 mg/d, and 45 mg/d, respectively) when they presented with signs and symptoms of thoracic spinal cord compression.” http://www.ncbi.nlm.nih.gov/pubmed/9588567

I thought the following was a very good article, that outlined the problem in layman’s terms:
“Medtronic's implantable morphine pumps have brought a miracle of pain relief for thousands of patients. But for an unlucky few dozen, the hockey puck-sized device, which is tucked inside the abdomen, has brought disaster.
The problem is granulomas, masses of inflamed tissue that occasionally develop at the tip of the intrathecal catheter. If a mass grows large enough, it can compress the spine, eventually causing paralysis. A smaller mass can block the catheter, leading to failure of pain control.
The number of reported granuloma cases is small, perhaps as many as 100 individuals out of the approximately 45,000 who have had pumps implanted since the device was approved by the Food & Drug Administration in 1991.
"I don't think anyone can quantify the incidence, since it is so rare," said Rick Boortz-Marx, M.D., director of pain medicine, University of Minnesota. See more at: http://drugtopics.modernmedicine.com/dr ... nj7Uh.dpuf
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FINAL NOTE: Interestingly enough, Dr. Prager has mentioned a concern with bupivacaine in the pump, but not morphine. I was told that I have to stay at or under 20 mg/day of bupivacaine (which I am at) or there is a risk of developing a granuloma.

Sharon,

Thank you for sharing your experience including what led to your decision to try the pump. I am very happy that you have had such success so far.

Sincerely,
Stephanies

Thanks Stephanies!
I appreciate you telling me that.
It's kind of scary putting myself out there like I am but I do it in case there is someone out there suffering as bad as I was a couple of years ago...

I just posted another long post here that continues about this topic and more...

http://www.pudendalhope.info/forum/view ... =74&t=6165

my hands and arm are starting to hurt so I have to stay off the computer for awhile!
bye for now!

Lottanerve, it must be very difficult to look back at those days. I try to avoid looking back but sometimes you have to. I also try not to think much about the possibility that the pain could return but just take one day at a time and enjoy it. Something about having been through the PNE journey and coming out on the other side makes the happy, good things in life seem especially happy and good when you can experience them again without being in dreadful pain. I'm so happy to hear you are having better days.

Violet

Violet, thank you! Your words mean a lot to me.
I posted a response to you on the other thread:
http://www.pudendalhope.info/forum/view ... 35&e=45735
and will post it again here...

I will read your words again, when I am hesitating about sharing my deepest feelings during this horrendous journey with PNE and IC.

It is not easy to share how far down your thoughts can go when you are suffering with constant pain.

But I do it now because when I was there, I searched the internet for someone - anyone - who felt or had felt the same way and had survived it. I was fascinated by anyone who had overcome unbelievable obstacles or tragedies and were living their lives regardless. I needed validation of my darkest feelings (not wanting to live) and freedom from guilt or shame for feeling them. I also needed HOPE to keep going. I looked for the tiniest shreds of hope anywhere I could find them.

We never know who is reading these words and where they may be in the fight to endure PNE or other chronic pain.

To anyone suffering who is reading this, know you are not alone and that THERE IS A WAY OUT. Even if you don't know what that way is, and can't see any possibilities right now -- there is a way out of the pain. Keep going, just one day at a time, even one hour or minute at a time when you need to. Pamper yourself in any way you can. Love yourself. Keep yourself as comfortable as you can (your position, ice or ice packs, heating pad, pillows) - watch videos (YouTube is great for finding lots of amazing stories of life, death, hope, medical stories, dog and cat stories) I loved watching lions and other "big cat" documentaries... I love seeing them in their natural habitat. Whatever comforts you. And don't be afraid to tell others how bad it truly is. Try not to complain or "whine" but just quietly explain and try to educate them with educational information and websites like this one...

wow Violet you really got me going! Much love to you and thank you for being here for all these years even though you are on the other side of the mountain, so to speak.