I’ve found relief and want to share how I got here

[Sk8rcruz]

So glad you got so much relief fromDRG! One of my doctors also suggested I try DRG and place the leads at L1 and S2. I was just a bit scared when I looked at the pretty big battery he would implant in my butt. How was your recovery from the implant surgery? Would the leads stay where they are? Thanks!

My DRG battery is placed well above my left buttock, closer to my left hip in a naturally occurring fatty area. I have a high waist and hourglass style figure and the battery, besides feeling like a hard spot amidst the softness around it, is not obvious. For reference at the time of installation I weighed 180 lbs and I’m 5’5” tall. I am now 168 lbs and the battery remains fairly unnoticeable.

[stephanies]

Sk8rcruz,

Thank you for the update. It is great that the DRG provided you some relief and that your doctor is working with you to implant new leads for more improvement and ga better quality of life. Thank you also for sharing your experience with the SCS. I use a Twin Cheeks cushion for driving and it helps some. Please keep us posted on your May surgery and how you are doing after.

Stephanies

[helpmelord]

thank you for sharing your successful story; thank god you found relief. i cant drive either; i don't think anyone gets how debilitating ic ibs and pn are. i've got all three. what do i do?
i find when i advocate for self, like you explained, bullet pt list etc., i am met w/ disdain or something. shut up and take this pill. i actually had my dr. dismiss me w/o telling me verbally why, or putting it in wrilting. that relationship fell apart because of her inavailability and no time to revw my med records. she was horrible to me. abandoning a 65F w/ chronic pain issues w/ no follow up or care is downright cold.
what do i do nxt ?
a 5th dr?
i'm only takin toradol and its not doing much. nerve blk consult at end of june if i don't off myself b4 then. i cannot and will not live like this.

[helpmelord]

honey, what is DRG ?

[Sk8rcruz]

DRG is for “Dorsal Root Ganglion.” There are more than a few different types of stimulators. SCS is Spinal Cord Stimulator. I trialed an SCS several months ago (because one of the leads on my DRG has broken a couple times). The SCS was a single wire with multiple electrodes spaced apart along the wire. It is placed on vertically on either the right or left side of the spine into the epidural space-mine was from T9 to T13 (i think). The wire floats in that space and the electrodes are configured to send electrical stimulation into “space,” but not directly into a specific nerve root. It kinda bathes over the corresponding vertebrae with electrical current. During the trial the battery is taped outside the body. Unfortunately it did not give me any relief and I felt the buzzing 24/7.
Anyway, my DRG was implanted December 2018, after a successful trial. The DRG uses a separate lead (wire) for each targeted nerve root. I have an implanted battery with 2 leads; one at the right side L1 dorsal root ganglion and another at S2. Every vertebrae has its own dorsal root ganglion so the stimulation is sent directly to the target. The leads for the DRG are like threads-very delicate-and are protected by a conduit (wire cover). In my case, the L1 lead must make a “turn” or loop to reach that target. Over time the wire inside the conduit partially broke at the “turn.” This has occurred twice over the years and then my last replacement L1 lead ended up migrating away from the nerve root. That’s why I gave the SCS a try. I am awaiting a special surgery to replace the DRG L1 lead again and add another that takes a different path between the battery and the target (as a back up). Not only that, but both of the new leads with be more securely anchored (sewn in). It is extra work for the surgeon to do that and insurance does not usually allow for special anchoring. The DRG, when everything is working as it should, reduces my pain significantly! The DRG is used for many types of pain but was not specifically designed for PN, or the twists and turns required for PN application. Abbott is supposedly designing a better lead but that could take years. My surgery is postponed because United Healthcare delayed payment for my last surgery, which delayed scheduling the new one (both were pre-authorized) and then terminated my coverage 2 weeks before I was scheduled to have it because I moved. Stupid me thinking I could move without their permission *sarcasm*

[April]

Sk8rcruz,

So your insurance discontinued your coverage? That's awful. I've never heard of moving being grounds to drop a client. What is the next step? Can you get this done with a new insurance company?

So glad the DRG stimulator reduces your pain!

April