Sacral Stimulator Implant for PN updated 3/6/15

[blightcp]

Yes I have two attorneys, and myself working on it. We are on our last appeal with private disability, and waiting for the court dates for Social security disability.

The private disability should be either settled or going to court by this summer, if its going to court we are looking at another 6 months.

Hopefully social security should be this spring for the court date.

[nyt]

river133, I am sorry to hear of your struggles with getting the medical attention you need. Many years ago they thought my mom was going crazy (over 50 years ago) and after much insistence by my father they tested her thyroid. Her thyroid was way out of wack and causing psychological changes for her. For over 50 years my mom has dealt with a medical community that never believes her when she tells them her thyroid is off. You would think after living with it for so long she would know but they really do not want to listen to her. Several times over the years they have wanted her to take antidepressants and ever time she refused and they tested her thyroid, her thyroid medication needed adjustment. My mother would totally understand your frustration and give you a big hug! It is so difficult when you live in places where the doctors really do not understand. Good luck with your stimulator trial.

Blightcp, I am glad to hear how much the stimulator has helped you. That is such good news. I have also spent much time fighting disability. It just stinks and is absolutely no fun! Good luck.

[quilter]

Dear river 133,

I wish you a great result with the upcoming trial. Remember that it's a process and may require much adjustment during; it took me 3 days of fiddling by different Medtronic reps to get stim in all the places it was needed, and get rid of it in uncomfortable areas. It seems like a large anatomic area in terms of pain, but the actual nerve area is very small so be patient. You may get a flare-up after the trial. Mine lasted a week or so, but to give the SCS a good test I was using it much more (and at higher settings) than I did once it was implanted.

If you decide to implant, I strongly recommend a non-rehargeable unit. The Medtronic was maybe 1/8" larger in all dimensions than the rechargeable. That's nothing compared to 1) the time it takes to recharge the device and 2) needing to carry extra equipment. Ask the stim reps and doctor at the end of the trial, but I was told that based on my usage during those days I could expect 8-10 years from the first battery, and the battery replacement procedure takes only 20 minutes. I felt that the extra 1/8" and a 20-minute procedure several years away was much less hassle. A PNE friend who had her Medtronic stim implanted 2 years earlier by the same doctor (and keeps it on almost constantly) got 6+ years from her first battery.

Make sure your doctor allows you input into where the stim will be placed. My doc required me to spend at least 2 weeks between trial and implant wearing a box of dental floss the same size taped to all the possilble areas. You must consider where belts, clothing waistbands, and seatbelts may put pressure over it, also your sleeping positions. I was told to arrive at the hospital with a box drawn on my skin, and he would try to accommodate my choice of location. Keep in mind that the external programmer must be placed directly on top of the SCS to turn it on/off. Mine was implanted just to the left of and slightly below my navel. The downside was that I had both sacral and abdominal incisions that took time to heal so sleep was tough for awhile postop. Hope it works for you! My reps were great to work with.

[blightcp]

Dear river 133,

Make sure your doctor allows you input into where the stim will be placed. My doc required me to spend at least 2 weeks between trial and implant wearing a box of dental floss the same size taped to all the possilble areas. You must consider where belts, clothing waistbands, and seatbelts may put pressure over it, also your sleeping positions. I was told to arrive at the hospital with a box drawn on my skin, and he would try to accommodate my choice of location. Keep in mind that the external programmer must be placed directly on top of the SCS to turn it on/off. Mine was implanted just to the left of and slightly below my navel. The downside was that I had both sacral and abdominal incisions that took time to heal so sleep was tough for awhile postop. Hope it works for you! My reps were great to work with.

I agree totally with quilter, my Medtronic rep was and is great. As for rechargeable and or not, I cant tell you, I went for the rechargeable one. I used my external stim so much and 24/7 that I felt the rechargeable was the way to go.

Position is key, I have mine basically above my left kidney, but if bending around to change a setting is going to be hard you may wan to think about it as quilter suggested. I settled into a setting that works for me, I only use the handheld controller a few times a week to check charge and minor adjustments.

Also give it time to heal, it can take up to 12 weeks for the system to finally anchor into position, the stimulator will be intermittent at first and get better, I still get some change in stimulation when I move and bend but I mostly ignore it, it does not bother me.

[river133]

Thank you so much for our suggestions. I will print your messages. I am so concerned about the sciatic,horrible leg pain,plus the pudendal. I am going to see my gp tomorrow and discuss a MRI for my back. I have had 3 of them previously and none showed stenosis. Something is causing much increased pain. I Have to wear my tens to bed at night. I am so tired.I don't know if I can do this one more day. I need to have someone take me to Mpls.on Fri.it is just a two hour drive,but I will need to go so often. Some how I will get through this. All of the what ifs are coming to mind. I guess I am just afraid,

[river133]

Trial went well today,,it is intermittent,the stimulation I mean. . The medtronic rep was great, have his phone # . My foot is buzzing. The pudendal nerve is not totally covered. He said at the final implant the lead would be moved over.One side of my rectum is numb. Oh,I have much to learn. My leg back pain is covered well with the stim. The stim is set at . 3.50 .My back hurts of course. Why is my whole foot buzzing It is also numb. . I had wanted to keep it on at night . The leads are in S4 and S5. This where they will put them for the implant.,just 2 leads. I need to go downstairs and set this much lower. I am lying on my back. Need to find a different position. HELP!

[blightcp]

Trial went well today,,it is intermittent,the stimulation I mean. . The medtronic rep was great, have his phone # . My foot is buzzing. The pudendal nerve is not totally covered. He said at the final implant the lead would be moved over.One side of my rectum is numb. Oh,I have much to learn. My leg back pain is covered well with the stim. The stim is set at . 3.50 .My back hurts of course. Why is my whole foot buzzing It is also numb. . I had wanted to keep it on at night . The leads are in S4 and S5. This where they will put them for the implant.,just 2 leads. I need to go downstairs and set this much lower. I am lying on my back. Need to find a different position. HELP!

My back was really sore from being a pincushion also, that goes away as it recovers.

The pudendal nerve joins with the leg and foot nerves, you are getting stim bleeding onto those nerves as well.

If it is possible, adjust the pulse with try making it shorter and or the pulse width to get rid of the foot issues.

My trial only had 2 leads, the final system had 4 on each side that are programmable.

Even if you lower the level to where you don't feel it, the stim is still working. You can also turn it off for 5 - 15 min and the stimulation will return.

I would watch the leg and try to check to see if the legs are just sensory or if motor function is involved, I would get my leg to lock up and freeze with my trial.

I would think and consider if the leg numbness is a valid trade off for the PN and other pain that this helps reduce.

Give it some time and consider all of the effects both good and bad.

Hang in there and keep track of everything.

[quilter]

I can't recall if my foot ever buzzed, but had to stuggle during programming sessions to keep my foot muscles from contracting. Sometimes that extended into areas of the leg. Those settings were immediately deleted because I couldn't walk or be functional with constant leg crarmps; we found settings that didn't cause that. Your back soreness should resolve soon, it's from exploring to find good spots for the leads. I was sore for a week or so after the trial, but not after the implant because he knew exactly where the leads were going. Also had some bowel frequency during the last 2 days of the trial, but that went away quickly.

If you end up getting the SCS implanted and don't like the programmer case they provide, go to a shop that has many styles of cell phone/pager cases. My Medtronic case required a belt, which was uncomfortable for me to wear, so I found a phone case at a mall kiosk that clipped onto my waistband. Used the Medtronic case to carry the programmer extension cable in my purse if I was traveling. Best of luck!

[river133]

There are not instructions to change the pulsating. My left side is taking care of the leg back pain..the buzzing is in the arch of my foot. The rigjt side is taking care of part of the pudendal.. # 1 on the settings is for my back and leg and #2 is for pudendal. During the trial were you both able to set the pulses? I know if I turn this off the pudendal will fire up, because I feel it burning now. Nerves get all angry with one another ,it is a family affair. Too early to tell, would love to have this just slightly humming and still take care of the pain. Quilter ,I looked on Amazon for cases. Great suggestion. One day at a time,or better yet,live in the moment. .

[blightcp]

The ability to change the settings is a choice the physicians make whether to allow the patient access to the feature during the trial.

You will have that control with the final solution.

If your foot is cramping, I would call the rep and see if there is a setting to adjust that, they may be able to help over the phone or Monday. Your legs and back should not be triggered.

You don't want your legs or other muscles contracting, that can cause other symptoms like sciatica after a while. I used to get sciatic symptoms from too much stim, the good news is a couple visits to PT will fixed that for me within a week.

I am glad to hear it is helping, Just got to get the kinks worked out. I will be praying for you.