Health Organization for Pudendal Education

Hi Folks
Does anyone know of a compassionate doctor who is knowledgeable and experienced in intrathecal pain pump therapy in the NJ-NY metro area? Hopefully this doctor would also have the ability/interest in managing other pain meds also.

Thanks in advance.
Kathy

I'm currently searching for the same thing in the New England area. If I find something I will let you know.

Hi
Thx! I do have a doc who is currently titating my dosage etc, but I would prefer to work to a doc who knows more about PN and painful bladder issues and understands that fact that the 2 issues are related..
thats hard to find, I know.
Also accessibility is so important.. as my doc is not easy to reach.
Its important to have a doc who partners with you as and talks to you by phone whenever needed .... that in itself would be re-assureing.
Luckily I have a great nurse, but am hoping to find a new doc with the above qualities.
Thx again,
Kathhy

HI Kath,
You're right - that's going to be a tough bill to fill. But I'm sure there's SOMEONE, somewhere. Just may take a while to find them.
I'll keep my ears and eyes open for you, too.
Hugs,
Karyn

Thx Karyn
thats so kind of you.
Any info would be great as I need a second opinion.
best wishes!

Hi Folks
a quick question:
A doc I spoke to recently said that that opiods meds in general are not that effective in relieving neuropathic pain. This is his opinion, but he said it is based on studies.
I have heard this before, but I also know of cases where folks are using opiods either orally or by other methods ( supps or pain pumps etc and getting great relief.)
I had some relief limited from one pariticular med.
However this could explain to me why I am currently in severe pain despite the intervention we are using.
Just wanted to check opinions from your experiences.
Once again the : "we are all different" rule applies!
Thanks everyone.

From my limited experience, I would most definitely agree with the doctor to whom you spoke. I have also been told that neuropathic pain does not respond well to most traditional pain meds.

I had a certain amount of pain relief from tramadol and from oxycodone, ie meds that are opiods - ok, tramadol is technically not quite an opioid, but anyway. Early last year I was in horrible pain despite being on the maximum dose of oxycodone that my doctor was willing to let me take.

I have had much better pain relief, to the extent of being effectively painfree if I stay within my limits, with meds specific to neuropathic pain, ie pregabalin plus topiramate. Works for me.

I have no experience with pain pumps though, and I don't know anything about them.

Here's an interesting article on the topic of opioids for neuropathic pain:

http://www.ncbi.nlm.nih.gov/pubmed/23986501

http://tinyurl.com/lyaywbm

Violet

Ths Violet
I will check this info out.
I don't know if opiods are for me....my fastmetabolism just processes them right out of m ysystem... (my metabolism is so fas that Ive been underweight since middle school years).
I had " a boatload of meds in my pump " according to my pump nurse... one opiod and 2 other mess in my pump.. in december 2013.
that was my best month..I could stand well and go to stores for awhile and occasionally cook dinner. I went to a few holiday parties.I perched rather than sat,...The "after pain" was bad ...but I functioned,, but was still housebound etc.
It was was far from optimal....so they took those meds out of my pump and changed to a new lead opiate .... They used a med that has helped rectally for a couple years, but not so much anymore. I have been so much worse since then, that Im beyond scared .
So many decisions to make ...so scary of how to cope with this pain. hoping a 2nd opinion doc will see me this week..

I wonder if my severe fear as time goes on (7 years) is holding things back. Hubby thinks so, as does my infusion nurse, tho she also thinks something is going on physically that the docs have somehow missed...I agree.



Thx again for info, which I will read!
Best wishes.

Kathy, if I remember correctly, Lottanerve had clonidine and lidocaine in her pump. Does yours have those?

What about Prialt....have any of your docs suggested that?

Violet