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Old 08-31-2009, 05:20 PM #1
billie billie is offline
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Originally Posted by Roxie2007 View Post
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
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Old 08-31-2009, 06:30 PM #2
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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


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PS: What is Barrett's Esophagus and the IVIG that you speak of. Color me "Relatively Ignorant" ! billie
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Old 09-01-2009, 09:31 AM #3
Trishann Trishann is offline
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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
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Old 09-05-2009, 09:29 AM #4
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Default 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?
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Old 09-05-2009, 11:55 AM #5
daniella daniella is offline
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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
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Old 09-06-2009, 02:31 PM #6
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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


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Originally Posted by kmeb View Post
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?
__________________

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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Old 09-08-2009, 02:04 PM #7
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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.
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Old 09-08-2009, 06:56 PM #8
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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


Quote:
Originally Posted by Silverlady View Post
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.
__________________

.


Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Old 09-22-2009, 02:37 PM #9
cdpratt cdpratt is offline
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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
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