Health Organization for Pudendal Education

Hi Friends
I am in the process of a pain pump trial.
I learned a lot about these trials from "Lotta Nerve" and others online. and also from my own experiences in trying to find an experienced qualified doctor.
One frustrating thing I learned is that each doc has his her own protocol for a trial and it may not necessarily be the method you prefer, or that is best for your case.

In my research, I liked the IV infusion method for the trial used by Lotta Nerve's doctor. With this method a epidural- like catheter is filled with a mixture of meds, for ex: a pain med (like Morphine ) an analgesic like Maracine and maybe a another med or two. The doc needs to tweak this mixture until he finds the dosage that works for a patient.
The advantage as I see it is he can work with it until he finds the right ratio for you needs.

The other method is a single injection in the lumbar spinal area of a particular medicine your doc choses for you. he doctor starts with a low dose' to be safe. If that doesn't work, he waits about a week and then tries again with a higher dose and so forth , This can take some time due to the waiting period between shots. This is the hard part!

My doc chose the latter method. I have had 2 shots of a medicine that sounded good on paper but thus far has given no relief ..In fact I am in much worse pain for having had to lie in the recovery room on the hospital stretcher 'bed" (my anal rectal area can't touch surfaces, without severe pain etc., so it has really upped my pain levels horribly.

I would much prefer to do the IV infusion method (A few folks on the boards have either tried this method or are planning to.
I have looked hard to find a doc who will do it.. The first doc I found was soo busy he didn't return phone calls and we got no info about my procedure. He never called till the night before the procedure ... at that point we figured he had forgotten about us and we had moved on to a new doctor. I was disappointed as this first doc has been doing this along time and had a good reputution
But Too much waiting.. hard to do when your pain is intractible, so we moved on to a local guy who seems fine. He is our insurance plan and we know him personally

However his technique seems to be the slow,once a week shot as I covered above. I get the sense that the infusion method I prefer, may not be something he is comfortable with..
So my question is: Does anyone know of a pain pump trained doctor in the NJ NY PA Tri-state area...I live in NJ about 25 mi from NYC and 2 hrs from Philly.
(States like Conn or Del or MD would be ok to consider as well)
I am desperate to try this IV method in the hospital asap (Ive been trying to get the trial done since February). I know very few folks have gone the pump route, but would appreciate sharing any names of docs that you know of.
Thx! and all the best to you all!
Kathy

Kathy, I'm sorry this is taking so long for you. I can see why you would rather go the first route. Wish I could help you out with this but I don't know the docs in that area.

I'm not sure I understood your description of the first method. Are you saying they put an IV (intravenous) catheter in, say in your arm, and try the different meds on you? Or are you saying they insert an epidural catheter while you are an inpatient in the hospital and tweek the meds that are delivered via epidural catheter?

I wonder if Dr. Zhou would know someone who could perform the procedure you are interested in. I've heard really good things about him and have e-mailed him myself. Really cool guy. He may not know how to do it himself but might know someone who would. http://ppa1.com/

Best,

Violet

Hi Violet
Thx so much for responding and undersstanding (and pardon my typos in my posts!) I was in a hurry.

That first method I described works as follows while in a hospital (or an out-patient hospital center) the doctor injects an IV into the intrathecal space (l kind of like an epidural given to moms in labor).
The IV is attached to a catheter in which he/she can put one drug like Morphine, (one method) or depending on his protocol and your needs, he can add a cocktail of meds.The doc can mix as he pleases and adjusts the dosage until the patient feels relief.. This method for a sounds more pleasing as you can use drugs like marciane ( a numbing agent for instance) along with pain meds.. With it the patient could possibly get quick relief as he used a high level of marcaine .
This is what worked for "Lotta Nerve" though years of other treatments had failed. She and I have spoken and she has been supportive and informative. I know we are all different (how often have we heard that old song!!) but at the same time, her issues are similar to mine in many ways..
Th
My doc is against this method as he says if you have more than one med on board, how do you know what's causing a potentia side effect, or conversely what is helping?
That makes sense , but Lotta Nerve's doc is with UCLA and had a great background, so it sounds like he is much more experienced than my local guy and knows what he's doing.
Im considering seeing him but he's on the west coast, and a cross country trip (by plane would be very tough.]
I also figured the one injection method would make it harder to' pass ' a trial, cuz it's only one drug at a given time, to address a complicated CNS issue..

I get the feeling that it could be a long and painful road if I stick with the local guy etc. Thus my search to find a doc willing to use the above method, etc.

Thanks for the suggestion of Dr Zhou? I have heard that name before and think there's a guy with that name affiliated with some NY hospital.. Is he a pain mgmt doc familiar with PN?
I will look him up online. I also heard that JMIL from our group is seeing a doc in Hershey PA who is using that method. I tried them but they aren't taking on new patients.
They recommended a group in Jersey who will see me and use that preferred method but Im wary as their reviews stated they were "businessmen who did procedures on everyone" and to "be careful." The "hospital" they work out of they apparently own ,and I ve never heard of it,, so that puts up a "red flag".

Violet, I will check into Dr Zhou...Thank so much....I will you know what pans out.
If anyone else, has a reputable pain pumt doctor please let me know ..I have searching since Feb and its like finding a needle in a haystack!
Thanks folks
Kathy

Kathy, yes Dr. Zhou does pain management and yes he is familiar with PN. Good luck and please let us know how it goes.

Violet

Hi Violet
Just wanted to thank you for info on Dr Zhou. I appreiciate your quick response. Dr Zhou is out of the country in China so I ended up sticking with my local pain pump doctor in order to the get things rolling promptly.
I was in the hospital for the trial or would've gotten back to you sooner.
My doc does feel am a pump candidate!
Thanks again for the info, should I need to have a backup for more info etc..
My doc is very conservative about the amounts of meds he used (safety first, rather risking side effects)
But you don't see the dramatic results as quickly with lower doses of meds. Will keep you all posted on what I decide etc.
Thanks again!
Kathy

Kathy,

I was wondering if you would mind sharing a little about your trial?

-During the trial what type of pain relief did you recieve.....significant...moderate?
-How long during the trial did it take for you to feel the relief required (% of relief) to proceed with the implant?
-Did you feel numb in the area where you have pain?
-Did you have the single injection?
-How long were you in the hospital during your trial?
-Could you sit at all during the trial?
-Were you satisfied with the Prialt medication used in your trial?
-When will you have the implant placed?

Thank you in advance for taking the time to answer my questions!

Take Care,

Jen

Kathy, you will get there eventually. Hard to be patient though, I know.

Violet

Thx Violet
for the encouragement. Its hard to stay calm and just "let it happen".. so many different protocols.. the "everyone is different" thing they all say ... we just pray we are in good hands thatwill work hard to get us feeling well enough to function relatively normally.
Hope you are having a good week,
Kathy

Hi Jen,
I sent you a post and answered your questions but I don't see it here right now.. I thought it went through. did you get it?
I will check my outbox etc and will pm you tomorrow just in case you didn't get it.
Hope you are doing ok!
Hugs,
Kathy

Hi Kathy,

I didn't see your post or receive a pm regarding my post with all of my questions (sorry there were so many!)? I'll continue to look for it over the next day or two.

Thanks!

Jen