Sacral Stimulator Implant for PN updated 3/6/15

[Ray P.]

Blightcp and river, please keep us informed on progress.


ray

[blightcp]

I am bored in the hospital bed right now. It is hard to type but I wanted to reply.

I don't have a SCS I have a sacral stimulator that runs along the pudendal nerve. It does help with the bowel and bladder function and that is its on-label FDA approved use.

Dr. Ross gave me two options:

1. a spinal intrathecal pump the traditional "pain pump"
2.a pump placed into the pudendal canal to deliver a local (bupivacaine) anesthetic onto the nerve.

I went with option 2, so far it is working really well, my pain med are down >50% and I am in almost no pain, the button to deliver the medicine works really fast, 1-2 min.

I went for a walk and got in trouble, they told me to try to be up and moving but did not think that I would go for a walk

I will update more later...

[blightcp]

Ha.. hey let me leave to room. Coffee...im free! Well not quite. I am off of the IV drip too.

As of right now I am relatively pain free and I am down 90mg of oxy a day!!!!
I have to stick around the hospital for a few says to make sure the pain stays this way, but so far this is great, threw is some loss of sensation but not numb.

[janetm2]

Wonderful news and continued success to you!!

Janet

[river133]

Carl,please ask your Dr. Exactly where the intrathecal pump was placed. Like S1 or l?. Why is it so easy to get your insurance accepted so quickly ?Are your stimulator leads disconnected? Is all you have in now is the pump to the pudendal nerve? Things sure do go sllloooow here in Mn. Does the numbness in the area concern you.? I will be having my pump placed at 7.am.on which ever day they decide . I will be staying for a few hours and then on my way home.. I need to see PT.before and after the implant. I guess they want to see if I can do flips or something. : they need to see the difference before and after. I will be going in for 4 or 5 days consecutively before surgery.. I certainly wish I had your Dr..I have been working on this since Oct. The only a Dr.around the Mn.area that does the intrathecal pump. Mayo clinic does not seem to recognize pn.
Give us your daily progress. Blessings Carl.

[river133]

You said it is in the pudendal canal. The last time I sent some info to Dr. Schultz that I had found on line,he called me and let me know that he has been doing this for 20 years. He is very stoic. How do I approach this issue with him.. Do I just say,hey,Dr.Ross delivers medication directely to the pudendal canal. I want the same procedure. .?

[river133]

Just heard about my MRI report from my spine. I have a nerve impingement in L5. Now what.? I knew it.,! I was hoping it wouldn't be. What do I do first. I have had 5 surgeries in the past 3 years. Including knee and broken ankle. I think I want to feel sorry for my self. NO,I CAN NOT DO THAT,IT IS BEHIND ME,I HAVE TO LOOK AHEAD.

[blightcp]

Carl,please ask your Dr. Exactly where the intrathecal pump was placed. Like S1 or l?. Why is it so easy to get your insurance accepted so quickly ?Are your stimulator leads disconnected? Is all you have in now is the pump to the pudendal nerve? Things sure do go sllloooow here in Mn. Does the numbness in the area concern you.? I will be having my pump placed at 7.am.on which ever day they decide . I will be staying for a few hours and then on my way home.. I need to see PT.before and after the implant. I guess they want to see if I can do flips or something. : they need to see the difference before and after. I will be going in for 4 or 5 days consecutively before surgery.. I certainly wish I had your Dr..I have been working on this since Oct. The only a Dr.around the Mn.area that does the intrathecal pump. Mayo clinic does not seem to recognize pn.
Give us your daily progress. Blessings Carl.

My epidural is nowhere near S1 is WAY low like on left of the coccyx.

I have GREAT insurance, the family plan is 1800 a month and is national BCBS, its from my former employer who is a major international company. I loose it next month, I wont miss the cost but the coverage is great.

Dr. Ross has a small army of fellows, at least 7 that I have met personally, so he can delegate tasks and get more done. They are all very good and focused on PN, they have all listened to me and understand the issues.

My stim is still going, it helps with the function of the bowel and bladder.

I was worried about the numbness, but it is really small I can just barely tell that there is a difference from the left and right side.

I have had a small amount of PN pain that the bolus keeps at bat I may ask to increase the dose some.

It is setup to deliver bupivacaine 0.125% at 0.1ml every 6 min so that's 1ml an hour. The bolus delivers an additional 1ml. I have been pressing the button every time I feel a twinge.

[blightcp]

I don't know all of the particular's of your condition but it may be that your condition is higher on the nerve branch than just the pudendal nerve.

I have done a couple things to help with communicating with the Doctors.

1. Make your own pain scale list it from 1 to 10 and list YOUR symptoms that you get. For example for me:

6 is an impact to the groin/testicles and the feeling of a forigen object in my groin that I feel should no be there.
7 is feeling like I was kicked in the testicles along with the nasua and total incapacitiation
8 is felling like there is immediate trauma or something that I should seek medical help.
9 is showing signs of shock, very rapid pulse, pale skin and unable to stand, is serious enough to go to the ER,
10 is KO I would need immediate medical assistance..
now ask THEM to rate the scale, and watch what numbers they assign. Now use THEIR numbers. This makes a big diffrence


You get the idea... everyone has a different interpretation of the scale and most people are wimps... we are NOT the pain you deal with would incapacitate anyone that has not lived with our condition. But the medical staff need to understand what you are feeling AND how often.

I am going to post this as well as I think it will help other people.

You are going in for the trial, and 'I would keep it, just keep notes of what you feel and how well you pain is managed. Also keep notes of your pain and symptoms now and during the trial. Use that to show your symptoms.

Carl

[nyt]

I am so glad that is working so well for you. Please keep us posted on your progress. I can hardly wait for all the good news.