Hi...I haven't been on here in what seems like forever. I hope everyone is doing pretty good....I know it's difficult to do "real" good with PN!
I worked all last school year and then had to have a new IV port for my IVIG infusion put in because the old went went Kaput....that was in June. Three weeks ago I had surgery and had the upper and lower Spinal Cord Stimulators put in because my PN pain has gotten SOOOO bad.
The Stimlators seem to be covering my PN pain pretty well BUT where the paddle is...in the back of my neck hasn't healed yet and the pain from that is TERRIBLE! The surgeon had to stretch the skin on my neck so it would cover the paddle of wires and that's made the nerves in my neck Very sensitive and painful. Has anyone had the stimulators put in and had problems like these I've mentioned?? I'm off work right now....FMLA for another cpl weeks...hopefully I'll be much better by then..........Roxie

Hi Roxie,

I believe I remember you from the interstital cystitial website (adminstrator Jill). I talk with Ronda (LeeLee88) sometimes on PM but don't post or rely much on the board.

Sorry to hear the problems with your stimlator, don't really know much about it but thought I would drop in to say "HI". It seems like one health problem after another doesn't it.

Hope you start feeling better too, Trish

HI Trish! Yes I remember you too. How are you doing these days? Since I get IVIG infusions weekly I don't have any bladder issues! Interesting huh?? The infusions are expensive but it's too bad everyone with IC couldn't get them!
My Neuropathy on the other hand has gotten much worse.....so painful! So my Pain Management dr. recommended the Spinal Cord Stimulator surgery....the surgery is a rough one but the stimulators work. I'll be glad when the 3 incisions get healed up! (if you've ever had a therapist use a TENS unit on you because of a pulled muscle etc...that's what the stimulator feels like....only it's inside the body)
Take care....It's great hearing from you! Roxie

I was glad to hear about the Spinal Cord Stimulators and how well they work. I hope and pray that your neck will soon heal, where the "paddle" was inserted. I used to have a TENS Unit and it was wonderful. You had to be sure the pads were placed right and adhered tightly, but once that was done, it felt like a hundred little "fingers" massaging the place where the pain had been. Here's hoping for your speedy recovery from the pain of the surgical site and that you can be pain free subsequently. Caring for You - billie

PS: What is Barrett's Esophagus and the IVIG that you speak of. Color me "Relatively Ignorant" ! billie

HI Billie!!! Good to hear from you!
Barrett's Esophagus....is Precancerous cells (Barrett's cells) in the stomach and esophagus from years of chronic acid reflux. Those cells can turn to cancer at any time and are VERY painful from stomach acid. I had 2 procedures.....one of the first patients my Barrett's specialist surgeon did the Halo 1 and 2 procedures on....and now I am FREE of Barrett's cells....and have been for 2 yrs now!!! He's thrilled and so am I!!

IVIG is a collection of over 100 people blood donation.....all the good stuff in their blood. It's VERY expensive....around $9,000 a week! and you get the IVIG thru an IV. My veins got really bad from all the infusion and I had to get a Port in my chest. Now the IV goes into the port each week. It's suppose to help people with Neuropathy. Take care......Roxie

Yes me too, hoping for a speedy recovery from the pain of the surgicial site and glad to hear that you have no more pain and difficulties with your bladder.

Trish

I have a spinal cord stimulator, implanted last Sept.08 ,, I have RSD.. unfortunately.. it irritates my RSD and makes it mad when I use it now..Like anything else..your timing getting it in is so important for it effectiveness... My temp. worked but the Dr. and unit managers made me wait 6 mos. for the perm. to be installed that was until a smaller unit was manfactured first..well I lost the effectiveness of my unit... No trouble with healing from the surgery, just always a tender area when bumped and strange sensation where is wired.. Be careful and be sure to time it right...good luck...

Have a restful night,

Wow, you are really dealing with alot of health issues,makes mine look like peanuts! I will put you in my prayers,Roxie.

I had my lower one done in June and upper done in August. I LOVE mine, too. Both my batteries were implanted in my lower back (the neck area sounds...ugh!). They do annoy me a bit, as they do put more pressure in that area. ( And that's the spot you'll get hit with doorknobs and shopping carts -LOL). The thing that worries me is, they say it takes 2 years before scar tissue stops growing and I hope and pray there won' t be much more!

It is a trade-off for use of these stimulators....but oh-so-worth it