Hi All....Spinal Cord Stimulators
 

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. :confused:

Hope you start feeling better too, Trish :grouphug:

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 :grouphug:

I know about TENS
 

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 from 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:hug:

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 :)

Roxie
 

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? :confused:

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

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

Back too
 

Hi Roxie,
I've not been on in a long time but I'm doing o.k. Sure glad the stimulators are working for you. I had wondered how you were because you just disappeared.

My Aunt just died from Cancer and that's where I've been. I'm terribly busy with my business too. But I just wanted to say that I'm so glad you are still with us and the stimulators are working.

Billye

P.S. Hello to all.

HI Billye!! So good to hear from you!
I haven't been on here in a long time either. Seems like I'm either dealing with pain or dealing with dr.s or insurance! My pain had been off the scale the past 6 months or so....really the pits!
So sorry to hear about your Aunt. My father passed away this summer.....he had just turned 79 and he passed away in his yard, doing what he loved best...working on his trucks.
I hope you are doing ok......sounds like you are very busy with your business.
I'll try to check in here more often....I start back to work tomorrow...I know my neck is going to be really hurting from all the driving I have to do now....ugh! Hugs to you! Roxie :hug:

I have a SCS unit..
 

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,

Scs
 

I had the lower spinal cord stimulator on August 10th and I swear I would kill anyone who would try and turn it off or take it away! The surgery was not much fun but I am finally getting to the point where the "surgical" pain is very minimal for most of the time. I had a lamenectomy several years ago with no success and of course I have been through ever pain management trick in the book and none helped for more than an hour. The Medtronic stimulator WORKS well for me and I am very happy I made the decision to do it. That's all for now so please pardon the interruption and go back to your normal business:D

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

I have 2 implants just like you ;)
 

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;)

Glad you 'revived' this thread
 

Thanks Vanna!
I was hoping to hear from SCS patients.....i see that the last posts were clear back in Sept. I hope they come back to share, I'd like to get to know them and to see, how they are doing with their's.
Good that you brought up the 'scar tissue' issue <--- cool rhyme! :p
That is one of the things that are a potential problem from what I've read.
I wonder if there are any 'preventative measures' a person could do ?
Probably not.
Too bad there isn't a way they coulda wired both your units into ONE battery so that you don't have to carry around 2.
I'm waiting for insurance approval. Did you have a hard time getting yours covered by insurance? I did the psyche eval and the doc wrote in a letter of "medical necessisty"......so we'll see where that leads.
There's still a small part of me (cold feet) that is wondering if this truly is what i need to do. I keep hoping that I'll have some phenominal 'breakthru' and find out that i was simply gluten sensitive or something.
I was tested twice for Lyme, amongst other 'toxicity' blood draws....i guess i'll never actually know the real cause of the PN.

I hope to hear from the others soon and i hope they are doing well with their implants.
TTYS
Rae