Go Back   NeuroTalk Support Groups > Health & Related Topics > Medications & Treatments > SCS & Pain Pumps

SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.

Nervous - Scheduled for my SCS Trial

Reply
Thread Tools Display Modes
Unread 03-23-2012, 03:39 PM   #31
ginnie
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,086
My Mood:
Default Hi about CRPS

Please ask Mark about this. He has some knowledge about SCS and the disorder of CRPS. I have researched just enough to know that this may not be the best opition. I agree with the other post. Ginnie
ginnie is offline   Reply With Quote
"Thanks for this!" says:
ger715 (03-23-2012), Mark56 (03-26-2012)
Unread 03-26-2012, 07:34 AM   #32
CRPSjames
Junior Member
 
Join Date: Feb 2012
Posts: 94
Default

Quote:
Originally Posted by Rrae View Post
I've been following this thread and just have to say -
It's wonderful that people come here to share their testimonies regarding their implants, that's what the forum is all about. But to make claims that ALL people with CRPS will have failed outcomes is crossing a line. Like Nanc said, there are quite a few people here with CRPS, including me, and we don't appreciate you speaking on our behalf. Just because some of us haven't had their units for over 5 years doesn't automatically put us in the catagory of 'failed implants waiting to happen'.


Please know that I have complete empathy for those who have had bad experiences with their units and crps spreading. Indeed, people need to know that this exists, and I appreciate your passion in what you are saying. However, you have no right to make claims stating that every single CRPS patient is setting themselves up for disaster by trying this method of pain management. Most of us here DO suffer from RSD and we can all agree it's a terrible condition to have to live with. Keep in mind, there are many varying degrees of CRPS and each person is unique to his/her diagnosis.

As we all know SCS is usually the last option after other modalities have been tried. 3 years ago when I was presented with this option, I had become hopeless and desperate and wishing my life could just end. At that time if someone were to tell me that I'd get 3 yrs of 70% pain relief from this nightmare, I would have thought I'd died and gone to heaven. If my unit were to quit working tomorrow, I would still be ever grateful for these past 3 yrs which got me out from under the grasp of suicide ideation.

I am not an SCS advocate, nor am I trying to sell these very high $$ units to anyone who comes along. I am sharing my testimony and mine alone, which is what people come here looking for. I agree wholeheartedly that there is a greed factor involved with the sale of many of these units and I think it's downright disgraceful when a Dr pushes someone to get this with the threat of discontinuing their pain medications. Yes, I've seen alot of 'wrong' in the approach some Dr's use. On the other hand, there are many doctors who present this option with pure and good intentions of possibly getting their patients to have a chance at effective pain management.

I know you've done alot of research on this.....but so have we. All I'm asking is please don't undermine our experiences. There actually ARE people out there who have had their units for several years. There are recipients who've come here sharing their success with their unit of 8yrs. One of the nurses who helped with my surgery has had hers for SEVENTEEN years and loves it to this day. The doc who did my implant has an impressive list of successful CRPS cases. So they ARE out there.

This isn't to say that there are absolutely NO problems with 'success' stories. SCS is a very high maintenence unit. Most of us have had revisions or lead migration, but it does not mean it was unsuccessful. I would gladly go back for revisions whenever necessary to be able to continue getting the coverage I need.

Your testimony is very valuable, but please, keep it to YOUR testimony. Feel free to post references also but keep in mind, alot of the stats we access are studies of clinical trials. Hooshmand's website is case in point. I personally was never in a clinical trial, nor was I a patient of Hooshmand, although I agree his website is impressive. Please respect the fact that there ARE positive outcomes and don't speak for the rest of us.

Respectively,
Rae
Please forgive me Rae for upsetting you. That was certainly not my intention. I am certainly not speaking on your behalf.

You and I however, are not so different. I, like you, was hopeless and desperate and not wanting to continue living when I made my decision to be implanted with a spinal cord stimulator. I just knew it couldn't get any worse. Sadly it did and eventually I became addicted to the narcotics that were needed to survive the unlivable pain and spread caused by the stimulator and I was wheelchair bound.

I too shared a close and trusting relationship with my rep and doctor. My request to self program the stimulator was readily honored and I had total trust in my doctor. The rep even sent me a birthday card. After the failure and my refusal for another stim the bottom fell out and the true relationships became apparent.

I most assuredly hope that your stim is long lived as I did not intend to cause you any anxiety.

You said that we all know that SCS is a last option. That is entirely incorrect as illustrated by the young woman who hopes to have a pregnancy with the help of a SCS. From her post it is apparent that she has not had CRPS long enough to exhaust all other options. Given the fact that a SCS was recommended so soon in her treatment and at such a young age might even suggest that her physician is not even aware of other treatments that might improve her condition and have a more favorable long term outcome.

On my recent long awaited appointment with Dr. Schwartzman, the top CRPS person in the country, I was struck by the kindness of the intake nurse. I was asked about emotional issues I was having and spoke of the guilt I felt for encouraging others to have Spinal cord stimulator implants and then watching them fail like mine did, one by one. She immediately told me that he does not recommend SCS for CRPS patients for reasons exactly like what happened to me and shared with me one of his favorite quotes to ease my guilt. It is by Maya Angelou.

"I did then what I knew how to do. Now that I know better, I do better."

Now that I indeed know better if I can save just one person from what happened to me it is worth it.

Last edited by CRPSjames; 03-26-2012 at 07:36 AM. Reason: typo
CRPSjames is offline   Reply With Quote
"Thanks for this!" says:
ginnie (03-28-2012)
Unread 03-26-2012, 08:29 AM   #33
Kelly0514
Junior Member
 
Join Date: Mar 2012
Posts: 15
My Mood:
Default

Hello Rae,

Thank you so much for your comments, I agree with you 100%. I am very grateful for all of the feedback I have received on this message board, but what I am looking for is constructive feedback. i feel with every procedure and option out there, patients will have good / bad experiences and I am open to hearing about all of them but I don't think it's fair to undermine the individuals that have had successful outcomes with the SCS and for those of us who have doctors that do genuinely care about our treatment and future. I'm sorry for those who have been treated poorly by docs who are only out for their commission and I hope that you have had the strength to walk away and the courage to find someone new that puts your well being first. But please don't turn my questions into a political arena bashing healthcare; while I disagree with A LOT of decisions and laws coming out of Washington, I also recognize that without my healthcare coverage, this procedure or even any of the care thus far, would be possible. I hope I don't offend anyone by this post, I just hope that we can stay focused on what's important and that is supporting one another as we are all in this same boat and share our experiences constructively in hopes that someone can learn from them.

I hope everyone is having a pain-free day!
Kelly0514 is offline   Reply With Quote
"Thanks for this!" says:
ginnie (03-28-2012), Nanc (03-26-2012)
Unread 03-26-2012, 11:20 AM   #34
ginnie
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,086
My Mood:
Default To those with RSD and CPRS

I turely have great empathy for what all of you experience in your quest to get pain relief. I really hope all of you find something that works, in what ever direction you go. I pray for all of you every day. ginnie
ginnie is offline   Reply With Quote
Unread 03-28-2012, 04:54 PM   #35
ballerina
Member
 
Join Date: Feb 2011
Posts: 393
Default

Quote:
Originally Posted by Kelly0514 View Post
Hello Rae,

Thank you so much for your comments, I agree with you 100%. I am very grateful for all of the feedback I have received on this message board, but what I am looking for is constructive feedback. i feel with every procedure and option out there, patients will have good / bad experiences and I am open to hearing about all of them but I don't think it's fair to undermine the individuals that have had successful outcomes with the SCS and for those of us who have doctors that do genuinely care about our treatment and future. I'm sorry for those who have been treated poorly by docs who are only out for their commission and I hope that you have had the strength to walk away and the courage to find someone new that puts your well being first. But please don't turn my questions into a political arena bashing healthcare; while I disagree with A LOT of decisions and laws coming out of Washington, I also recognize that without my healthcare coverage, this procedure or even any of the care thus far, would be possible. I hope I don't offend anyone by this post, I just hope that we can stay focused on what's important and that is supporting one another as we are all in this same boat and share our experiences constructively in hopes that someone can learn from them.

I hope everyone is having a pain-free day!

I couldn't hurt to ask your doctor to give Dr. S a call for a phone consult. I believe Dr. S is the top CRPS doc in the world. He is at retirement age and has been at this for years. He has seen it all and his life's work is CRPS. I only suggest a physician phone consult because the wait list of CRPS patients to see Dr, S. is about 2 1/2 years. I have been waiting for two years. My own PM doc has contacted him with questions.

Best to you!
ballerina is offline   Reply With Quote
"Thanks for this!" says:
ginnie (03-28-2012)
Unread 03-28-2012, 09:32 PM   #36
Kelly0514
Junior Member
 
Join Date: Mar 2012
Posts: 15
My Mood:
Default

I apologize for my ignorance but who is Dr. S? where is located? Any idea where or how I can find other CRPS specialists?
Kelly0514 is offline   Reply With Quote
Unread 03-29-2012, 07:00 AM   #37
ballerina
Member
 
Join Date: Feb 2011
Posts: 393
Default

Quote:
Originally Posted by Kelly0514 View Post
I apologize for my ignorance but who is Dr. S? where is located? Any idea where or how I can find other CRPS specialists?

I apologize for my shorthand. Dr. Robert Schwartzman is the top CRPS doctor in the world. When I was first diagnosed with CRPS my Pain Management doctor immediately referred me to him for a complete evaluation because my case was so severe and progressing rapidly. Dr. Schwartzman is located in Philadelphia.

Another excellent resource is Dr. James Fugedy in Atlanta. He specializes in cutting edge, non-invasive treatments for intractable neuropathic pain conditions.

I just received two more PM's this morning from two CRPS patients with SCS that just stopped working. Both had spreads to the surgical site of implantation. One now has an ended career. The other is now unable to care for her infant. Both are worse than before.

Please consider putting off your trial until you consult with a more experienced doctor. You can always decide to do it later. You are so young.

Dr. Schwartzman has a very long wait list. Dr. Fugedy is more accessible.

I don't mean to ignite a backlash of comments. I don't want to see anyone who is getting relief from this monster of an illness have a failed stimulator. I just don't want you to be one of the many failures at such a young age when other treatments apparently unknown to your current doctor have not been exhausted.

Please send me a pm if you would like more info.

Hoping better days are ahead for you!!!!!
ballerina is offline   Reply With Quote
"Thanks for this!" says:
ginnie (03-30-2012)
Unread 03-30-2012, 06:34 AM   #38
ballerina
Member
 
Join Date: Feb 2011
Posts: 393
Default pregnancy and Spinal Cord Stimulators

Bothe the FDA as well as manufacturers of Spinal Cord Stimulators list pregnancy as a contraindication for spinal cord stimulators. See below as an example of one of many Journal articles on this subject.

North R, Shipley J, Prager J, Barolat G, Barulich M, Bedder M, et al. Practice parameters for the use of spinal cord stimulation in the treatment of chronic neuropathic pain. Pain Med. 2007;8(Suppl 4):S200S275. [PubMed]
ballerina is offline   Reply With Quote
Unread 03-30-2012, 08:12 AM   #39
Kelly0514
Junior Member
 
Join Date: Mar 2012
Posts: 15
My Mood:
Default

In many of the replies posted, people have referenced that I have not exhausted all of my options. While I'm sure I didn't try all of them, I have been trying since 2009 when the injury occurred. I have had 12+ nerve blocks that were unsuccessful and months of physical therapy - after going through this for 3 years, the SCS was presented as another option. If you feel that the SCS is a poor option, what others options do you suggest I try instead of the SCS? I continue to build a resistant to all of the pain meds I have been on and now are up to Oxycodone and Percocet, both as you know are highly addictive which I have already started seeing symptoms of. As this time, I haven't been presented with any other options other than the SCS so I after much reserach and conversations with people I know who have them, decided to try the trial. I was advised that the trial is not invasive and is a minor procedure and gives me the ability to see how I react to it before the major implantation. So, I am asking you, what options should I try instead of SCS? I would be more than willing to bring them to my doctor or change doctors if that's what it takes. But what I do know, is that I am only 30 years old and there is no way I can be pregnant while I am taking 6+ Rx's daily.
Kelly0514 is offline   Reply With Quote
Unread 03-30-2012, 08:27 AM   #40
ginnie
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,086
My Mood:
Default Hi Tina

Thanks you for that post and the research you did. I just started to look into that being pregnant with the SCS. You really found some good articles and information. Since I am slowly seeming to develope some kind of this in my left foot and ankle, I am a bit concerned. I am not sure yet what is going on with me, I find out the 12 of the coming month. I have empathy for those that have this terrible condition. The information exchange on Neruo talk if fabulous.
I got that friend of mine all the help required. Things are so much better, and yes you did help, very much. There was one on the list able to do more.
Thank you again. ginnie
ginnie is offline   Reply With Quote
"Thanks for this!" says:
ballerina (03-30-2012)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Scheduled for my second surgery ferna125 Thoracic Outlet Syndrome 15 02-28-2012 02:26 AM
nervous person vs.nervous patient john1947 Bipolar Disorder 0 06-28-2011 09:43 PM
Surgery Scheduled - UGH Nikko Bipolar Disorder 14 09-27-2007 08:26 PM
CLINICAL TRIAL: Study of Chronic Autonomic Nervous System Failure Stitcher Parkinson's Disease Clinical Trials 0 07-23-2007 05:27 AM


All times are GMT -5. The time now is 07:13 PM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.


All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy
NeuroTalk Archives