For all those who have been following my posts concerning the January 5 DRG implant I wanted to let you know it will need to be rescheduled. My daughter and I were five minutes from hospital when Dr called saying he had a virus and surgery would need to be rescheduled.
I understood and appreciated his calling personally but emotionally was devastated. I'll post once I have new surgery date. Rocky68
How utterly wretched for you after the inevitable huge build up you must have felt. hill-top
oh man, that must have been awful. Hope they give you a new date soon.
Hello Rocky 68,
Sorry your surgery was postponed. I had my surgery on the same day January 5th. They placed the Medtronic 3058 Neorostemulator in that was the leads and the battery;it was actually turned on today January 9th they said it had to heal before turning it on. I was so exited this morning before they turned it on and when they actually did turn it on it was not in the spot that I told them that worked for me during the trial period. I was then told as long as it's operating in the pelvic floor area. This device should have been placed on the left side. I'm feeling it on my right. I really hope this is going to work. I came home and tried all 4 settings and can't get a sensation on my left side . I go for my checkup next week. For now just trying to see what will work best it's only been an hour. I will keep you posted.
That sounds so frustrating. Why would they do permanent implant different than Trial? Don't they listen to us? My new surgery date is 1/26. Dr had not told me device could not be turned on same day as surgery. My insurance approval period is 12/28 - 1/28. They are cutting it close. Let me know how you do in next couple of weeks. They are placing leads at S1 and S3. Where are your leads placed? So is your's considered a Dorsal Root Ganglion Stimulator? Rocky68
Hang in there! I sure know the anxiety that goes along with all these procedures. Just know that everything will now happen under the bestr circumstances and you will be on the other side of this procedure soon.
Thinking about you and hope time passes quickly!
I understand you had the implant on Jan. 26th, how are you feeling?
I was getting ready to do post (trying to figure out how to post on website) when daughter visited. My surgery lasted two hours and they left Stimulator on.
Surgery was on Friday and I removed patch last Sunday and was able to shower. I will say for about four days I was bothered with incision. It was hard to get on and off the higher mattresses.
I must say I am disappointed with St Jude Rep as she did not know how leads were programmed or what leads covered which areas. I will return to Dr Tuesday and have very specific questions for Rep.
I can say at this point Stimulator has 80% improved spasms from under rectum to vagina. I have rectal pressure but not nearly as severe.
I still experience lower back pain and have low buttock spasms. I was having muscle spasms midway buttocks but turned down lead stregth and they went away
I'm hopeful to see more improvement once I discover which leads cover which area and once leads are adjusted how long should they be left at that setting. I just need more input from Rep. Currently I'm happy I went thru procedure. Rocky68
I’m so happy for you! Unfortunately I can’t say the same. I just wonder in my case because I had RSD years ago., which is damage to the sympathetic nerves, my nerves just don’t react the way they’re suppose to. Very frustrated!! We actually turned the devise off to see what would happen. The pain after 20 min., was awful to say the least. Actually I do feel it was much worse then before I had the implant placed! I’m seeing the Dr Feb 14th with a lot of questions.
I'm sorry your pain is worse. Where actually is your pain? The St Jude Rep said they were implanting the DRG for woman with clitotral pain. I can't imagine how she must have suffered. Thankfully my pain involved sacral area, rectal pressure and spasms. Never got into female anatomy. Keep me updated on your visit. Best of luck. Rocky68
I’m currently doing the DRG trial for rsd in my foot and would love to know how your experience went
Lstor. I am doing well. It took up to about eight weeks ago to get the correct setting on the right side. Whenever the rep set the levels it I was having too many of my own nervous spasms on that side and was not able to detect the signal from the implant. I ended up with the settings too high which aggravated my condition more. I finally adjusted levels in right side until I knew it was not causing nerves to be over active.
I will say it has helped greatly with the muscle spasms and burning I was having. I still am on tramadol for back pain and have begun 20 mg of Cymbalta to help with nerve endings. I understand 60 mg of Cymbalta is the recommended Dosage for neuropathy but my system does not handle medication that well.
I still cannot sit very long without having to take medication but I was able to withstand a four hour trip to the beach without too much pain.i mostly have low back pain that I have to deal with. I am happy I have gotten some decrease in the spasms and burning and tightening of the buttock area. I never had any problems in female area. It was primarily in rectal and perineal area with low back pain. I hope this helps. Rocky 68
Sacral nerve stimulator block
Local and or Steroid Root Nerve Block
Functional electrical stimulation
Pudendal nerve release surgery
Coping with feelings of sexual stimulation in front of family/friends/at work...
