Health Organization for Pudendal Education

Hurting like crazy. I was in heaven today for about 4 hours. Dr. Schultz gave me bupivicane and fetenal for the trial. I was feeling ok when we left the clinic ,even decided to sit in the front seat on the way home. Didn't last longWe had to stop to go in the back and watch the clouds. . Go back on Fri to continue the trial. They will try different meds I am sure. Then have some relief for a while and come back home to wait for the final to get the hockey puck stuffed in me. .I am just hurting so much right now, gabapentin and tylonal are not helping. I need something stronger. That is another story. My grandaughter is studying to be a CNP.She was there today. Nurse asked if I would like some oxycodone. I said sure! My gd. said no gramma. So i just took a diazapan,a flexoral,gabapentin. Hope I get to sleep soon. Will let you know how Fri.goes. Will get through this. Once it is in for good things will go much better.

Omitted to ask about the horrible itching from the bupivicane or fentinal. I remember being somewhat itchy coming down from the oxycodone, but this was my whole body. As the meds wore off so did the itching.

Ellie,
Ugh with the itchies! Cannot wait to hear you say things are on the upswing! Hang in there.
Janet

OK it has been a while and things are going pretty well, I have had 3 pump dose adjustments so far.

I have had a reduction from 6 oxycodone 15mg to 3 (7.5) a day that is a 75% reduction of the immediate release in 6 weeks.

My instructions are to continue the (3) 30mg mscontin and to not to try to reduce that yet.

I am off of most of the surgical restrictions, and I have to say this is really helping my pain, it is also nice that the bolus is helping too. It is not perfect, but I does take the edge off within 2 min.

I have significant loss of some sensation in my left leg as a direct result of the pump but no motor issues.

The pump still has 10mg of bupivacaine per ml, with a refil interval of 70 days at the moment.
Right now the pump is using 2.8 mg a day and a 0.125mg per bolus.

These number will change at my next appointment, but for now it is working really well.

I still cant sit, and the hypersensitivity is still there but much less pain, and at this point I will take less pain.

Feel free to PM me if you have any questions.

Thanks

Carl

Ellie, I hope the trial turned out to be successful. I would be a little concerned about the itching though and would definitely mention it to the physician.

Glad to hear things are going well for you, Carl. I think your patience in getting the proper adjustments on the medications is paying off.

Violet

Thanks for the update Blight. Glad to read your pain is less!

Stephanies

Violet, _what is your concern with the itching. I may be itching for a long time with the pump?

The trial was the same meds as the 1st trial. Itchy again. They told me to take benadryl. I get twitchy legs from that . The implant nurse said that one guy had to have his pump removed because he couldn't stand it.She said most time it goes away. Lord,I hope so. I will have the cathater placed in the thorasic, will cover back and leg pain. . They said implan will be end of June or beginning ofnJuly.

Good luck with the pain pump river. You deserve a break from this terrible pain.

Ezer, my daughter read all of your story and is totally impressed. I wish I could have had your success. We are all different. I am also amazed that you went through the unsuccessful surgeries, and still found a way to heal yourself.
I have a nerve impingement in L2 or 3. I think, spurs,but the pudendal is the most painful. I will be better,this impingement has decreaced my walking ability. I know I could just go walking and let it hurt. I am just too tired at this point. I was walking an hour a day until 2 years ago. I have hope after reading blightcp. SOON!