RSD and Spinal Cord Stimulators

byrd45 Mon Jan 05, 2009 7:02 pm

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From: byrd45 (Original Message) Sent: 8/18/2005 7:24 AM
From: byrd45 (Original Message) Sent: 10/11/2004 11:03 AM
Hi Everybody,
Once again it is time for our weekly discussions. Feel free to join our discussion on RSD/Chronic Pain and the implantation of a spinal cord stimulator. I just want to say that all the information I have on this is purely second hand since I personally do not have a spinal cord stimulator device. From what I have heard from two different RSD patients I have had conversations with is good and bad. Now don't get me wrong this is a viable option for alot of people and does help with pain levels, but I always think that any procedure should be an informed personal decision between you and your doctor and loved ones. The information I do have is that this is a surgical procedure where they implant a small unit and electrodes along the spine and their is a remote outside the body for you to adjust the unit. The remote looks alot like like a small remote control you might use for your TV. My roommate I had during my last hospital stay had a spinal cord stimulator device and was showing me where they put it in and how you use the remote to adjust it to help with pain control. She said it does really help her at this point but she had to have a second procedure because there was a problem with the leads. I have heard this before but hey they are still learning as they go I guess. A close friend of mine has a brother-in-law who recently has gotten a spinal cord stimulator installed and news is he is doing well. If you look on the links page at our main site there is also a link to a article about Jerry Lewis and his experience with Chronic pain and the implantation of a spinal cord stimulator.Infection is always a concern, but from the people I spoke with they didn't have a problem with that happening to them. In my opinion this has helped alot of people but as always there are some risks if you want to reap the benefits.I would love to hear from any members who have comments or experiences related to the implantation of spinal cord stimulators.
Robyn

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From: byrd45 Sent: 8/18/2005 7:25 AM
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From: byrd45 Sent: 11/11/2004 2:55 PM
Hi Jim,
This is the discussion you wanted to read.
Thanks for your interest,
Robyn

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From: Jim Sent: 11/11/2004 3:37 PM
Thanks Robyn,
I had my permanent SCS implanted in May of this year The place where spinan leads where placed hurt the worst for about 6 weeks there is always that chance on infection I was placed on High dosage antibiodics for 10 daysto lessen that Where my leads went in Dr said I had a small spinal fluid leak with a knot that increased in size as day went on I spent about 1 month sitting and sleeping in my recliner due to that So far my SCS has helped as long as I am seated doesn't take the pain completely away just makes it semi bearable but still have swelling when walking and pain only now it doesn't take a week or more to recover from walking in super WalMart now just takes a day or 2 Also Drs are not sure if my meds can ever be lowered as I am still taking all the same dosages now as I was My experience is made worse due the fact that i have a crushed nerve injury

Anyone can ask me any other questions that they can think of anytime

Jim

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From: byrd45 Sent: 8/18/2005 8:36 AM
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From: glendapullum Sent: 5/19/2005 8:44 PM
Hi Tobi
I've had rsd for 13 yrs and guess I learned over the yrs to tollerate the pain and just live it .Well after about 8 yrs mine started to spread to my other arm and lower back .I have done blocks for the past 12 yrs but they just seemed like I wasn't getting very good results the last couple of yrs.My doc suggested the stimulator about a yr ago and I was very reluctant .I just did the trial for it Mothers day weekend and its the best thing I've ever done .Now I can't wait for the actual implant .I was also on neurontin but gained a ton of weight on it plus had allot of memory probs so my doc put me on elivil .It works great for me along with celebrex,ambien ,and ultram along with percocit
Hope this helps you some
hugs
glenda

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From: xerona Sent: 5/20/2005 7:30 AM
Hello
My daughter Janel has had a similar experience. We were able to help her with some very odd changes. They did, however, make sense. We eliminated the microwave, as it causes interference in the nerve impulses. We also stopped soda pop. The caramel coloring does something to the nervous system. We have also used a combination of passion flower, valarian root and St. John's wort instead of prescription meds. Although she is currently having a flareup, she does not have the extreme pain to where she cannot move. She is also not having the mood changes as strongly and it has helped with the cramping pain. This combination was recommended by an herbologist for me as I searched for some type of answers for her. This has been a god send because at least now she is able to tollerate what pain she does have and function within a normal range.

Cheryl

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From: byrd45 Sent: 5/20/2005 10:23 AM
Hi Tobi,
I haven't personally been down that road yet,but I think if this is something you really want then keep asking until they agree with you. Maybe if you printed out information on spinal cord stimulators and took it to the doctor and let them know you understand about the procedure and this is something you are serious about pursueing that might change their mind. Is this a procedure they have done for others with this doctor? Maybe their hesitation is that they are not experienced with doing this procedure. I could be way off but just trying to look at all the possibilities. I understand you being hesitant about taking traditional pain meds. Depending on your dose have you considered them raising the Neurontin? I recently had to do that because it wasn't helping me like it did before. Them raising it has helped my level of pain relief. Just a suggestion in the meantime since you aren't making any headway with your doctor at this time. I hope everything works out as you want it to!
Love,
Robyn

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From: byrd45 Sent: 5/20/2005 10:30 AM
Hi Cheryl,
I think that is great you have looked at alternative treatment and it is working for your daughter! That is wonderful news. Tell your daughter I am glad this treatment is working for her and wish her all my best. It must make your heart glad to see her being helped by this.
Love,
Robyn

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From: Rittlemom1 Sent: 5/20/2005 5:18 PM
Good afternoon. I have a spinal stimulator , it was only put in a couple of months ago. The improtant part of this is they put in a temp. one first to make sure it works for you. If not fine, if so then they go ahead after a couple weeks or so and put in the permenant one. Your doc has nothing to lose but at least giving you the temp. and then taking it from there. My pain doc followed the "text book routine and timing" blocks , epideral , radio frequency and when all that failed the stimulator. I have only had RSD for 6 months so he was pretty quick in moving forward as he felt that was in my best interest since the longer you wait the smaller the window for remisssion on a new diagnosis. I would press forward and continue to be proactive about your care. Good Luck , Kathy

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From: byrd45 Sent: 5/21/2005 2:56 PM
Hi Kathy,
Your doctor sounds wonderful this world could use more like him. Have you considered adding him to our RSD docs board? That way if someone is looking in your area it could help them out. Just a suggestion no pressure...How is your spinal cord stimulator working out so far? Is it giving you alot of relief I sure hope so! Have a great weekend!
Love,
Robyn

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From: Bandit36052 Sent: 5/21/2005 3:36 PM
Thanks everyone for your information. I will continue to push for the device. I do think it will help.

Hope all is doing well.

God Bless
Tobi

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From: byrd45 Sent: 5/23/2005 2:56 PM
Hi Tobi,
I wish you lots of luck with it! Let us know how it goes.
Love,
Robyn