Story of Pain pump at L5 Retrgrade to S1/S2 update 6 MAY 16

Nerve blocks using many techniques, and medications - options discussed in detail

Re: Surgery Complete! Pain pump placed at S2 update 4/24/15

Postby quilter » Tue Jun 16, 2015 7:02 pm

Numb instead of pain is a beautiful thing! It gives your mind and body a break from the norm, if only for a few hours.
Acute left vag/rectal pain 1999 lowering into chair. Dx 2006 with PNE/VV by PTs, Dr. Garcia, Weiss, Hibner. Many shots. PNMLT: left PN barely fuctional. Left TIG by Dr. Hibner 2007 (ST lig). 75% improved 1 year postop, slow decline. Pelvic floor Botox 2010. Left sacral SCS 2011 after good trial; removed 2012 due to NEW left S2 & rectal pain, bowel freq. Re-do left TIG by Dr. H & 5-day ketamine 2013; 1-1/2 years postop 70% improved. New post-SCS Sx are worse than PN Sx.
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Re: Surgery Complete! Pain pump placed at S2 update 4/24/15

Postby nyt » Tue Jun 16, 2015 10:11 pm

Carl, thanks so much for updating us on how you are doing. I'm glad you are getting all the kinks worked out and finding relief. The success that individuals have had with the pump is very encouraging. Again thanks for sharing and keep us posted on your pain pump journey.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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Re: Surgery Complete! Pain pump placed at S2 update 4/24/15

Postby LottaNerve » Wed Jun 17, 2015 11:54 pm

Carl,
I LOVE that numb feeling!!!! It is a miracle to not feel that knife pain that slashed into the left side of my most private area.... and sometimes the pain was so intense, along with my bladder pain, that I could not stand being awake. I had to medicate myself to sleep!
I used to pray that a doctor could numb me below my bellybutton permanently, even if I couldn't feel my legs, even if I couldn't walk!! Now I have the best of both worlds -- it's a compromise because I can still feel the "knife" barely there sometimes -- but I can also walk and be active!!!
YEAYYY BUPIVACAINE!!!!
YAYYY CLONIDINE!!!
YAYY MORPHINE!!!

A mixture of these three, with bupivacaine the highest amount and a smaller amount of morphine, has turned my life around - has given me back my life!!!
I'm SO GLAD IT IS HAPPENING for you CARL!!!! :D :D :D
http://icandpne.wordpress.com
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
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Re: Surgery Complete! Pain pump placed at S2 update 4/24/15

Postby egley » Tue Jul 14, 2015 11:52 pm

Hi Carl,

Very glad to hear the pain pump is doing it for you!
Our stories have a lot of similarities, except that I was never in as much pain as you.

I know next to nothing about anatomy, so I get lost fairly fast when the discussion contains medical terms.
There is only one tube coming out of your pain pump correct?
I do not know where they put my catheter but believe I heard my surgeon mention S4, but I would need to check with her to be sure. It is the same vicinity as where the 'electrode' of the neuro-stimulator is inserted, I seem to recall.
Yours is at S2? Is that lower in the spine than where S4 would be?

My pump does not help with the PNE pain much, but it does help with the muscle spasms caused by the neuro-stim surgery.

I am wondering if the position of my catheter is correct to best handle PNE pain.

Thanks!
Skip
Right testicle pain started ~2005
Stanford Pain clinic (~2007).
Dr Weiss diagnosed PNE; said I needed to go to Hibner for surgery (2010'ish). Sorry, no surgery for me.
Neuro-stim (~2012); pain pump 13 or early 14.
Pump removes leg spasms (from neuro-stim surgery) but only maybe 25% of PNE pains.
Still hunting for the holy grail of 0 pain from PNE.
Prialt and fentanyly in pain pump (10 bolus/day allowed); Oxycodone (4x/day)
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Re: Surgery Complete! Pain pump placed at S2 update 4/24/15

Postby blightcp » Wed Jul 15, 2015 2:34 pm

Hi Skip,

My pump is 2 Vertebra higher up than yours. The pump does work for everything "south" of the placement, if I use my pump bolus a lot, I can get the penis and scrotum to go totally numb.

I was given the choice of S2 or L4/5. S4 sounds too low to me. IMO, the only reason to do that would be to prevent leg numbness, but the PN root is at S2. The doctor could have pointed the pump "up", but according to my surgeon that is not the recommended procedure. I you have questions, I would get the operative reports and check them.

I have one tube is all that is used and it is anchored to the spine on the left side of S2.

S3 is the next lower down and is more focused on the actual glands of the penis and the scrotum sensory nerves, it also is around the outside of the anus, think of a bullseye with rings, the anus is the center and you will get the idea.

S4 is the area around the anus. S5 is the center bullseye directly around the anus.

S1 is also the Feet, S2 is the back of your leg right above the hamstring and ACL.

I do have some persistent numbness in the left leg that does not bother me. But I get occasional numbness in the legs that makes it hard to walk. Dr. Ross changed the speed at witch the medicine is delivered and that kept is from spreading too much.

I go in for my first refill the first week of Aug and I am hoping to add some clonidine to the mix.
PN by sedentary job and commute
Treated for IlioInguinal pain 2008-10
PT by Dr. Conway's team | 3 PN blocks @ Elliott in Manchester USA
TIR 2010 and TG by Dr. Conway in May of 2012 uncovered nerve damage, declared surgical failure in May of 2014
PT and bed rest continues
Employer refused accommodations in 8/13, now in the disability war.
Sacrial Stimulator 9/14 by Dr. Ross Boston MA
Anesthetic pain pump trial 3/16/15 by Dr. Ross
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Re: Surgery Complete! Pain pump placed at S2 update 4/24/15

Postby blightcp » Wed Jul 15, 2015 2:48 pm

I thought I would add an update, Sorry that it has been a while.

I am now up to 3.005 mg of bupivicane a day with a 0.125 bolus. The bolus has been changed to a delivery time of 2 min, instead of 1 min, this has decreased the spread of the bolus into my legs.

I have totally weaned off of oxycodone and switched to hydrocodone. I then got off of that totally this week! :D

I am now only taking (3) MsContin 30mg, a 12hour time release pain medication. I tried 2 a day but I was too sore.

Since April that is a 59% reduction in opiate use with almost zero side effects. A couple headaches and my bowels are readjusting but nothing I would consider the painful image we have of withdrawal. The pain clinic psychiatrist I see is ecstatic... He says very few people can get off the pain meds that quickly with almost zero side effects.

I just restarted pelvic PT, my pelvis and groin were getting way to tight and this was increasing my pain. The same person is doing it, Dr. Conway's PT specialist, I was sore for 4 days but I noticed a huge difference in my mobility after.

As always feel free to post or PM me, I get an update in my email so I will get back to you as soon as I can.
PN by sedentary job and commute
Treated for IlioInguinal pain 2008-10
PT by Dr. Conway's team | 3 PN blocks @ Elliott in Manchester USA
TIR 2010 and TG by Dr. Conway in May of 2012 uncovered nerve damage, declared surgical failure in May of 2014
PT and bed rest continues
Employer refused accommodations in 8/13, now in the disability war.
Sacrial Stimulator 9/14 by Dr. Ross Boston MA
Anesthetic pain pump trial 3/16/15 by Dr. Ross
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Re: Surgery Complete! Pain pump placed at S2 update 7/15/15

Postby Violet M » Sun Jul 19, 2015 1:10 am

This is great news that you are making progress so quickly, Carl! Wishing you continued improvements with PT but please take it easy. ;)

Violet
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.
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Re: Surgery Complete! Pain pump placed at S2 update 7/15/15

Postby egley » Thu Aug 06, 2015 9:52 pm

Hi Carl,

I am trying to understand the logic of each portion of your treatment.
If it seems right for me, I will start discussions with my pain care doctor.

The bipuvicane at S2 is meant to 'numb' the pudendal nerve to remove pain?
Is your major pain in the testicle?

You said it could numb your leg with too many boluses.
Was it so numb you had a hard time walking? If so, how many boluses before you noticed some trouble walking?
Is this the only downside, or are there others?

How about constipation? Does this bipuvicaine at S2 have an effect on constipation, or are most of your issues concerning constipation related to the oral opiates?

Thanks so much Carl,
Skip
Right testicle pain started ~2005
Stanford Pain clinic (~2007).
Dr Weiss diagnosed PNE; said I needed to go to Hibner for surgery (2010'ish). Sorry, no surgery for me.
Neuro-stim (~2012); pain pump 13 or early 14.
Pump removes leg spasms (from neuro-stim surgery) but only maybe 25% of PNE pains.
Still hunting for the holy grail of 0 pain from PNE.
Prialt and fentanyly in pain pump (10 bolus/day allowed); Oxycodone (4x/day)
egley
 
Posts: 32
Joined: Fri Sep 17, 2010 6:43 pm
Location: Calee-forn-eye-ay

Re: Surgery Complete! Pain pump placed at S2 update 7/15/15

Postby egley » Thu Aug 06, 2015 9:53 pm

Sorry, forgot to ask about the reasoning behind the clonidine...

Thanks!
Skip
Right testicle pain started ~2005
Stanford Pain clinic (~2007).
Dr Weiss diagnosed PNE; said I needed to go to Hibner for surgery (2010'ish). Sorry, no surgery for me.
Neuro-stim (~2012); pain pump 13 or early 14.
Pump removes leg spasms (from neuro-stim surgery) but only maybe 25% of PNE pains.
Still hunting for the holy grail of 0 pain from PNE.
Prialt and fentanyly in pain pump (10 bolus/day allowed); Oxycodone (4x/day)
egley
 
Posts: 32
Joined: Fri Sep 17, 2010 6:43 pm
Location: Calee-forn-eye-ay

Re: Surgery Complete! Pain pump placed at S2 update 7/15/15

Postby Violet M » Thu Aug 06, 2015 11:52 pm

Skip, just wanted to give you a link to an article that explains the theory behind clonodine being given intrathecally.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3289691/
See the discussion section

Violet
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.
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