PAIN PUMP

[Grammy]

Does anyone know why people with pne do not go for a pain pump. It would seem a good solution to this problem and yet it is not frequently mentioned anywhere for pne. A pain pump is suppose to deliever a tiny drop of medication right to the interthecal space in the spine. That tiny bit is more than any of us could take by mouth. Maybe someone who has a pain pump might develop this thread and let us know what it is all about. PLEASE respond if it has helped you

[wendy7]

Hello Grammy,

There have been a few others with a pain pump, for PN symptoms, but I hope that someone with the use of a pain pump, can let you know if they have been helped or not with it. The only thing that I can remember people saying about it, was that, like taking oral pain meds, the pain pump woks the same way. There is a need for more and more medication, to be administered, over the course of time. But, I would definitely like to hear others thoughts on this as well, and what their experience has been with the use of the pain pump, for PN issues.

Take care,
Wendy

[Violet M]

Barbi on the old forum had a pain pump successfully implanted but she said the doc had to adjust the placement of the cathether several times to get it in the right place. Opioids would require more over time but something like prialt which is derived from a snail toxin might not but there can be side effects.

Violet

[kathyd]

Hi Folks
Pain pump and esp the drug Prialt sound interesting.. I live in the NY area and many of the innovative things 'veI had heard of on these boards which are allowing folks with PN symptoms to function ... have never been offered to me.. I have tried various unsuccessufl procedures..blocks etc. I've tried many things
..but will say that pain mgmt in my area has been very ineffective and not pro-active.

I would love to hear from folks also who had results from pumps or pulsed radio frequency..
Tho I've done all I can to get help for this condition and avoided sitting completely for over 2 years. I continue to go downhill..
Any info would appreicated ,as my anal pain in unbelievable..
Thx!

[Jax87]

Hey Kathyd,
I posted to you in another part of the forum, but I'm not sure you saw it. Anyway, have you tried Dr. Kenneth Chapman in NYC? I saw him this summer. I stopped with him after a guided nerve block because I figured out my problem was really hip pathology, but he is supposed to be one of the best pain management doctors in the area. I think that he may do the pulsed radio frequency as well.
My ob/gyn is Dr. Dena Harris at SoHo Obygyn in NYC, and she found Dr. Chapman for me. She also was the one finally got me on a good combo of meds so that I am comfortable most of the time. (yay!) There are lots of options out there, just keep demanding that you get some pain relief and answers!
Hugs,
Jackie

[kathyd]

Hey Jax
Wow I have the same docs Harris and just started with Chapman recently. tho I had seen a couple times in 2011. I was Dr Coady's patient for 3 yrs until she stepped down recently so now I one of the many new patients that Harris inherited..
She referrred me to Chapman for pain mgmt...I am fairly new with him .
I am very happy to hear that they have helped you. I have had some work done on my hip, (labrum tear repair on my problem side idn 2009. tho my pain has never been in my hip.
Thx for the encouragment .. (sorry I missed your other post to me)I had been off this site for some time.
I will PM you about these docs
Kathy

[Violet M]

Thanks ladies for posting about Dr. Chapman. I sent him a message and he agreed to be listed on our website. Very nice for a doctor to respond like that. Good luck with whatever treatments he offers you Kathy.

Violet

[david s.]

I had bi-lateral pudendal nerve decompression with Lee Ansell, MD in 2003. It helped for approximately 1 1/2 yrs., when I developed severe SIJD. so that I wear custom knee ligament braces to walk any distance. (My knees themselves are ok, but under much stress from pelvic instability, despite years of prolotherapy, which helped). Pudendal neuropathy worsened, so I needed oral narcotics. I had an intrathecal pump implanted over six years ago. I recently had my second pump implanted, due to the battery wearing out. My pump is filled with morphine and bubivicaine. It is refilled every few months, through a gasket (like you would fill a basketball, but under sterile conditions and with a hypodermic needle by medical personnel). The pump works better for me than oral narcotics. Before a permanent pump is implanted, you get to try a temporary unit to see if it helps. I take oral pain medications: Lyrica 300 mg twice daily, as well as valium 5 mg. 3 times daily (for muscle spasms). I take 10 stool softener pills (generic colace) and 6 senna to avoid constipation.

I had surgeries in 2008 & 2010 by Michael Hibner, MD, who freed the right side (in 2008) and left side (2010) of the pudendal nerve from scar tissue from my 2003 surgery,and replaced the missing sacrotuberous ligaments with cadaverous gracilis tendon. This may have helped my walking somewhat, though I still need my custom ligament braces.

I use good quality cushions designed for pudendal neuropathy (i.e. with essentially separate cushions for right and left buttocks, since there is an empty space 3 1/2" wide and 11" long between rt. and lt. buttocks) when sitting upright. I spend much of my day in a zero gravity chair. I can sit upright for up to two hours, some days. My usual sitting/driving range is 40 minutes or so. I drive a minivan, since the chair, with seat and back at right angles, are better for pudendal neuropathy. My average pain level is about 3, on a 10 point scale. I walk 1/2 daily and exercise, to strengthen muscles around my SIJ, within the limits of my PN & SIJD.

I have recently had thermal radiofrequency treatments at the L-3 dorsal sympathetic ganglia, bi-laterally, and at the Ganglion of Impar (between the sacrum and coccyx), which eliminated virtually all pudendal nerve pain (I still had SIJD musculoskeletal pain) for three months. I was not able to discontinue any of my other pain treatments, however. PN pain has returned, since I missed my last treatmen. My radiofrequency MD is critically ill, so I will try to find someone else who can do this. Hope this helps regarding the intrathecal pump, and shows it in relation to my other treatments.

[Violet M]

David, I hope you find another physician who can help you. I'm sorry to hear about your physician being ill.

Have you had to increase your pain pump medication or does the original dose still seem to be effective?

You have truly been a fighter throughout your PNE journey and I appreciate the fact that you come back now and then to tell us how you are and what's working for you.

Best,

Violet

[david s.]

I increased the dosage a few years ago, but have kept it the same since then I have a device by which I can give myself extra medication electronically. I have had it for a few months, but have not used it. I prefer using ice under my sacrum, while reclining on my zero gravity chair, as I am doing while I type this on my EasyChair Workstation, which holds my keyboard and monitor on a swinging arm.

I have an appointment in early January, with a different physician, in the same group, who has, according to a nurse who works with him, a lot of experience with thermal (i.e., not pulsed) radiofrequency. The treatment works by damaging sensory nerves, thus blocking the pain signal. The nerves apparently recover, in three months or longer, at which time pain signals gradually recover.