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posted
Hi everyone:

I am new here. I am a 29 year old woman with severe chronic back and leg pain. It started when I was 16 and, after multiple surgeries and all sorts of medication adjustments, I ended up having a stimulator implanted on 1/16 (I also take methadone and morphine and have been on those for years as well as other meds).

Anyway, I had a difficult time deciding whether to have the permanent implant and I also had a hard time finding information from patients. So, after having my surgery, I decided to write a blog about my experience in hopes of helping other patients.

Also, if anyone has any questions about the process, please don't hesitate to ask.

The blog URL is posted in my signature!

Best,
Danimal


Author of Chronic Stimulation- a blog about living with chronic pain and a recently implanted neurostimulator

http://chronicstimulation.blogspot.com/
 
Posts: 3 | Registered: 04-08-2009Reply With QuoteReport This Post
Picture of Karen Lee Richards
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Hi Danimal,

Welcome to ChronicPainConnection! Thanks for sharing your blog with us. I read a few of your entries and they were delightful. You're right – it is hard to find other patients who can share their experiences with a stimulator.

I hope you'll be checking back here on our forum from time to time. Then when anyone has a question about neurostimulators, I'll send them here to connect with you.

Best,
Karen


Karen Lee Richards
ChronicPainConnection Expert
 
Posts: 218 | Registered: 03-16-2007Reply With QuoteReport This Post
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Hi Karen,

Thanks for your response and thanks for letting me post information about my blog..I really appreciate it.

I will most definitely be back here..this looks like a really wonderful forum. I was really happy to find a thread about chronic pain and pregnancy.

Danimal


Author of Chronic Stimulation- a blog about living with chronic pain and a recently implanted neurostimulator

http://chronicstimulation.blogspot.com/
 
Posts: 3 | Registered: 04-08-2009Reply With QuoteReport This Post
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Hi Danimal

My name is Bjorn (yeah the "o" with two dots over the "o"), living in Sweden.

I am the husband to a wonderful woman - now 36, love of my life, who the past 4 years have been living on painkillers for an un-operable back injury -which has prevented her (well I usually use the term "us" as I have always felt as a part of a "pain team" even though I am not actually the one who has to live with it.... well I do.. kind of) from a lot of life´s experiences, including trying to get pregnant. (due to drugs)

Recently her physician told her that a neuro stimulator is an option and now I am trying to get as much information about this as possible.. There are loads of articles about this but very few from the actual patients' point of view.. using google I found myself in this forum, reading your posts and link to your blog.

I have given your URL to my wife and I want to thank you for enlightening us.... we need to know a lot more about this procedure, she is scheduled to a "trial" in June....

thanx...

//Bjorn
 
Posts: 2 | Location: Sweden | Registered: 05-05-2009Reply With QuoteReport This Post
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hi..

i was just wondering how it feels to have a spinal cord surgery and where and how much does it cost to have one? i wear a brace for a year but stops wearing it now..i think i am traumatize and i am afraid to wear it again..my doctor suggested to wear my brace for 23 hours everyday until i have turned 21 of age, which is quite impossible for me, i still need to wait for 5 years to be officially cured. i am thinking if i should consider a surgery rather than wearing a brace.By the way, my whole spinal cord is at risk, starting from the neck. I've been searching for what type of spinal curve i have but results are hard to find..my doctor said that if my curve continues to progress, i will have difficulties in breathing, and if i choose surgery, there is a percent on being paralyzed, and he said that i might not be able to take the pain..it's hard to describe my spinal cord curve but this is how it looks like..from the neck there is a slight curve, then a s-shape down from the neck, and at the end of the s-shape is a slight curve again...i dont really know what to do right now...i hope you can help me...


rio
 
Posts: 1 | Location: philippines | Registered: 01-10-2010Reply With QuoteReport This Post
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Rio:
Hi
I have had a stim since march of 06, and a intrathecal pump since August of 06. Having quite a bit more experience with it all than you, if you have any questions feel free to shoot them my way.
Have a great day
 
Posts: 654 | Location: Northwest Indiana | Registered: 08-10-2009Reply With QuoteReport This Post
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Hello,
I am a 25 year old, and I have had wrist pain for the past 3 years. I have had 4 surgeries and the doctors still feel there is something "mechanically" wrong. The pain management doctors are going under the assumption that it is RSD.
The pain has put my life on hold, I cant drive because I'm in agony for days after (therefore my social life is at a halt), I cant go to school full time for my masters because I can't write without pain.
Pain management has had me on multiple pain medications, including narcotics. They just brought up the option of possibly implanting a Medtronic Neurostimulator. I am concerned because this seems like a BIG step. And its not guaranteed that the stimulator will work. I have a couple questions for you.
1. Is the stimulator visible through the skin? Do you have any pictures posted?

2. Do you have any side effects that I should be aware of?

3. Do you believe this helped your pain? Are you pain free??

Thank you for your response!
Kara
 
Posts: 1 | Registered: 02-25-2010Reply With QuoteReport This Post
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Hi All,
My name is Rick, I am actually at this site to get info from people with an SCS to find out what I should do next with my problems with my SCS. I am 39 and have had an SCS implanted in my behind for 2 years now for severe RSD of the entire left upper extremity region. I have the Medtronics unit with 16 leads throughout my entire back & chest. At first I thought I had finally found the answer to my troubles. I have dealt with the same narcotics and the assortment of about 7 other medications daily, and the way I was feeling was pushing me over the edge. Now after 2 years I can hardly deal with the added pain from all the damn scar tissue. I mean it is a severe pain that has taken on a life of it's own inside of me. Besides that, now after many adjustments of my stimulator, everytime I turn it on for relief it is CAUSING severe muscle swelling in my chest wall to the point I feel I am having what I would think a heart attack would feel like. Now I have chosen to keep the unit off for the last 2 weeks. Might sound crazy, but I would rather deal with RSD alone than to deal with RSD and my left breast swelling to about 3 times the size of my right breast, and the burning pain of the scars too boot. People, please think long and hard before putting these units into your body, leaving you with the inability to do tests like MRI's. May sound silly, but as I am getting older, I hate to have limitations of what tests can be performed on me to possibly save my life. Please tell me what you think, I am ready to tell my doctor to get this thing out of my body. What also concerns me is how many doctors are trying to push people with less than serious conditions to have these put in. For me it was the last resort decision, and I am in BAD shape, from an Ulnar Nerve/ Spinal Cord injury. I am here to tell people thinking about doing it, don't take this stuff lightly. This is a foreign object in your body, that does leave a nice scar, as well as about 4 other scars for the fishing of the lines depending on what you need . And if you bump it into anything, it does hurt like hell. It does affect your ability to lay on the floor. It does affect your ability to have sex with the unit on, and for example with my placements, if I have my unit on rather high and I need to cough, I will be falling on the floor due to my left leg letting out anytime I cough due to one of the leads laying in just the wrong place along my spine. I would love feedback. Don't mean to sound all negative, I am just pissed off with my situation and the thought of yet another surgery. Thanks for reading.

This message has been edited. Last edited by: Karen Lee Richards,
 
Posts: 1 | Registered: 04-02-2010Reply With QuoteReport This Post
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Kara,
I am a 43 year old with RSD and just had the stim implanted on 10/05/2010. If you want to see more about my situation visit my web site at
http://web.me.com/mnbhogan/iChronic/Welcome.html God Bless ...Mike

quote:
Originally posted by Cronic Wrist Pain Can you help?:
Hello,
I am a 25 year old, and I have had wrist pain for the past 3 years. I have had 4 surgeries and the doctors still feel there is something "mechanically" wrong. The pain management doctors are going under the assumption that it is RSD.
The pain has put my life on hold, I cant drive because I'm in agony for days after (therefore my social life is at a halt), I cant go to school full time for my masters because I can't write without pain.
Pain management has had me on multiple pain medications, including narcotics. They just brought up the option of possibly implanting a Medtronic Neurostimulator. I am concerned because this seems like a BIG step. And its not guaranteed that the stimulator will work. I have a couple questions for you.
1. Is the stimulator visible through the skin? Do you have any pictures posted?

2. Do you have any side effects that I should be aware of?

3. Do you believe this helped your pain? Are you pain free??

Thank you for your response!
Kara
 
Posts: 2 | Location: Rochester, New York | Registered: 11-05-2010Reply With QuoteReport This Post
posted Hide Post
Hi Nan of the dunes, I really want to know about both can u tell me which one are you most satisfied with for pain. Does the intrathecal pump cause difficulty with movement? Thanks Robbi
quote:
Originally posted by Nan of the dunes:
Rio:
Hi
I have had a stim since march of 06, and a intrathecal pump since August of 06. Having quite a bit more experience with it all than you, if you have any questions feel free to shoot them my way.
Have a great day
 
Posts: 12 | Location: Michigan | Registered: 10-30-2010Reply With QuoteReport This Post
Picture of las
posted Hide Post
I had a neurostimulator implanted on 9/11/2009. I rarely use it now as I don't like how the stimulation causes my leg to cramp when it is on. Should it be doing this? I use the stimulator for foot pain so the stimulation has to travel down my leg to get to my foot.

Do you think I should go to the expense of meeting with the doctor again?

Thanks for the input,

LAS
 
Posts: 1 | Location: south carolina | Registered: 01-30-2011Reply With QuoteReport This Post
posted Hide Post
Of course c your doctor and find out the reason for any problems. I am not going to get that type of stimulator I am going for the Drug Delivery Medtronic Thanks Robbie
 
Posts: 12 | Location: Michigan | Registered: 10-30-2010Reply With QuoteReport This Post
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What an excellent post. I have been thinking along the same lines but have could never channel my thoughts that well or grasp the <a href="http://www.choose-meds.com"> concepts properly</a>. Your post absolutely states what I always intended to say.
 
Posts: 2 | Registered: 02-08-2012Reply With QuoteReport This Post
posted Hide Post
What an excellent post. I have been thinking along the same lines but have could never channel my thoughts that well or grasp the concept completely. Your post absolutely states what I always intended to say.
 
Posts: 2 | Registered: 02-08-2012Reply With QuoteReport This Post
posted Hide Post
This is my first time on this site and not real sure how it all works.I had the scs trial a few weeks back and ended up in the OR for surgery by the end of the day with a spinal epidural hematoma in much more pain lg scar/ large bills from everyone hosp/ drs out of work on STD really im still in shock about how badly this went for me would love to hear from anyone who had any thing like this.
 
Posts: 2 | Location: va | Registered: 05-19-2013Reply With QuoteReport This Post
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