Pain pump??
Re: Pain pump??
Missing, the information about Intrathecal Pain Pump is here.
Re: Pain pump??
On January 27, 2011 I had the pain pump placed by Dr. Goldstein, the radiologist who works with Dr. Hibner. At day 10 I showed signs of infection and was treated with antibiotics. I had a temp above 101 for three days in a row, so I pulled out the catheter at day 13. Aside from that very uncomfortable aspect of the pain pump procedure, I did get relief throughout the process and for about a week after pulling it out. After that week, however, I have to say that I am back to square one with the same symptoms as prior to the procedure. That was my experience, I hope it is helpful to those of you considering the procedure.
Re: Pain pump??
Interesting that the relief lasted for a whole week after removal of the pump. You probably had your hopes up during that time; it must have been awful to have the pain come back. 
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: Pain pump??
ditto what Celeste said. What did Dr Hibner say - any conclusions? Path forward?
RR
RR
Cyclist till perineal pain onset R side (Apr'08). Dx with PN (Aug'09). Lyrica gave 30% pain reduction. Potter MRI (Oct'10) validated at surgery with Dr Hibner (Nov'10) - found nerve attached to scarred STL. Now sitting 10 hrs/day vs 1 hr/day pre-op. Occasional MRI-guided steroid injections by Dr. Jan Fritz at Johns Hopkins. Surgery video = http://www.youtube.com/watch?v=6FDwana6SQU
Deep neuropathic burning pain flares have been gone since surgery...Grateful to Dr Hibner.
Deep neuropathic burning pain flares have been gone since surgery...Grateful to Dr Hibner.
Re: Pain pump??
Prof, I'm sorry it did not work out for you. That must have been a bit scary when you spiked a fever and very disappointing that it did not work in the end. I think as PNE patients we get used to going into things with very low expectations but still there is always that glimmer of hope that maybe this will finally be the treatment that works.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Pain pump??
I agree ...Violet M wrote: think as PNE patients we get used to going into things with very low expectations but still there is always that glimmer of hope that maybe this will finally be the treatment that works.
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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John Carter
- Posts: 92
- Joined: Sat Mar 26, 2016 2:25 am
- Location: trapped in Texas... DFW...
Re: Pain pump??
So u had a infection also linked with Hibner by that Dr Gold.... was 2010 i think
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John Carter
- Posts: 92
- Joined: Sat Mar 26, 2016 2:25 am
- Location: trapped in Texas... DFW...
Re: Pain pump??
Hibner almost killed me.... i would of bled to death when the surgery scar split ripped open and the pain knocked me out... would of bled to death if my friend was not on his way and found me few minutes later....
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Goldenturtle
- Posts: 8
- Joined: Sat May 30, 2020 11:20 pm
Re: Pain pump??
John - please give me more details about your surgery. When did you have the surgery? How soon after your surgery did your scar rip open? What did they do when you went to emergency room (i.e. about infection and new stitches, etc)? How are you feeling now? Did Dr. Hibner's pudendal nerve decompression surgery ultimately work - are you feeling no pain now?
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John Carter
- Posts: 92
- Joined: Sat Mar 26, 2016 2:25 am
- Location: trapped in Texas... DFW...
Re: Pain pump??
I got a pain pump finally and since pain meds are taken away from most all eventually it is bout only choice to get a intrathecal pump.... can only wish that the doctor will turn the meds up to a survivable level..... and that it stays anchored in the spine... first docs surgery had the catheter just pull loose and rolled up outside of the spine and the damn guy left me like that for 9 months... like i was the crazy one not getting any relief.... and hibner has some wierd way that surgeries get infected... my PNE site litterealy exploded the surgical cup open after so much pressure from a infection.... one other person on the board said hibner's group did a pump but that one was infected badly too.... and get prialt in with the pain med as soon as u can to block some torture signals...