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

[quilter]

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.

[nyt]

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.

[LottaNerve]

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!!!!

[egley]

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

[blightcp]

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.

[blightcp]

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!

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.

[Violet M]

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

Violet

[egley]

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

[egley]

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

Thanks!
Skip

[Violet M]

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