Health Organization for Pudendal Education

Have been wondering about you. Did they ever give you morphine in your pump? Or are you still receiving just bupivicane?
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. Aug.4th is the date. She told me it can take up to 6 months to regulate the meds. Well,we will find out soon. I will be having the pump placed on my right backside. 7.5 years and maybe this will actually help at least 50%. Carl,do you still need oral meds? I am back on perkaset,and tramodol. It is all my physician will give me, she said it doesn't do anything for nerve pain. I don't know how I managed with just the gabapentin and tylonal for almost a year.
At the MAPS pain clinic they have an excellant pelvic PT. If I could drive 2 hours every few days ,it would be wonderful. 8ne step at a time. The pain has been so sharp and stabbing. It brings me to jy knees at times. I remember telling my husband at the end of the day a few years back,that ,this has been my worse day for pain,and then I remembered I say it most days. .We have all had to be so stron , putting one foot in front of the other.Hope,it is truly what keeps us going ,Hope.

Hopefully this is the light at the end of the tunnel for you River. You are right that we have to try and stay hopeful.

My best,
Stephanies

Has anyone had a successful stim implant by Dr Ross? If so where are your leads. I have read about Kit s success with the drg but practically no one on the East Coast has done more than two or three. I am in the process of contacting Dr Ross via my pain provider to see if he has used the new drg. The rep of the company said I would need to go to New York to find anyone who has done thirty or forty of the implants. The drg sounds almost too good to be true!

If you are in Pennsylvania you could check with Dr. Michael Fishman on how many he has done. His contact info has been added to the list of doctors in the left-hand menu of the website at pudendalhope.org.

Violet

Hey I know it's been a while:

Yes, I still see Dr. Ross every 3 months to refill the pump. I have a bupivacaine and fentanyl in the pump. I am still on some time release morphine but I have recovered to the point that some days I feel normal.

PN pain is still a daily friend most days but I can manage sitting on soft surfaces. I can go to the movies the offer reclining seats.

The stimulator helps with the bowel and bladder muscle tone and I use it primarily for that. If I feel like it not working right I turn it on for a few days.

I have to run, but I do still get PM's and try to respond to posts.

Thanks for the update, Carl. Sounds like you are a busy guy now and that must mean you are getting back into living a more normal life.

Violet

blightcp wrote: ↑Thu Jul 19, 2018 12:03 pm Hey I know it's been a while:

Yes, I still see Dr. Ross every 3 months to refill the pump. I have a bupivacaine and fentanyl in the pump. I am still on some time release morphine but I have recovered to the point that some days I feel normal.

PN pain is still a daily friend most days but I can manage sitting on soft surfaces. I can go to the movies the offer reclining seats.

The stimulator helps with the bowel and bladder muscle tone and I use it primarily for that. If I feel like it not working right I turn it on for a few days.

I have to run, but I do still get PM's and try to respond to posts.

How are you now? Have you overcome the disease?