[Roxie2007]

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

[Trishann]

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

[Roxie2007]

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

Originally Posted by Trishann

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

[billie]

Originally Posted by Roxie2007

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

[billie]

Originally Posted by Roxie2007

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

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

[Roxie2007]

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

Originally Posted by billie

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

[Trishann]

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

[BEGLET]

Havent heard from you in long time! Good to hear that you were able to keep working, and getting IVIG, and that its working.... never heard of anyone getting spinal cord stimulators for PN pain, great to hear that it works.... they are talking about one for me for disk degeneration to get rid of pain from that which is to the point where I can barely sit for more then an hour, and I'm very on the fence about any surgury anywhere near my back - what type of doc did your surgery? Did you get several opinions?

[daniella]

You know you are in my thoughts but wanted to say it again. Also though I know you don't have RSD many over on that board have scs so you may get some feedback on recovery and what more to expect later on. Sending good wishes

[Roxie2007]

HI Great hearing from y'all.
Yes I had several opinions about the stimulator surgery. My Rhumatologist, my pain management dr. and also the surgeon. It's really helping with the PN pain. My pain was growing by leaps and bounds to the point where it was very difficult to go to work each day. So when the pain management dr. suggested I try the trial stimulator for 3-4 days, I thought, what do I have to lose! It's not an easy surgery but I wouldn't trade these stimulators for anything now that I have them! I have the upper and the lower stimulators.
I have a guy friend who has terrible back issues from an accident and from several surgeries that didn't help. So 5 yrs ago he had the stimulator surgery for the back/legs and it's worked great for him! He went back to driving semi and doing great.
I hope you can get something to help you with your pain.....I know how bad it can be! Take care....love hearing from you! Roxie

Originally Posted by kmeb

Havent heard from you in long time! Good to hear that you were able to keep working, and getting IVIG, and that its working.... never heard of anyone getting spinal cord stimulators for PN pain, great to hear that it works.... they are talking about one for me for disk degeneration to get rid of pain from that which is to the point where I can barely sit for more then an hour, and I'm very on the fence about any surgury anywhere near my back - what type of doc did your surgery? Did you get several opinions?