I'm a little reluctant to post as I think this might be an example of one. If that's the case, I don't want spook anyone considering neurostimulation.
On the 13th of this month I had surgery at the Cleveland Clinic in the hope that neurostimulation might relieve some of my pain. My pain used to be described as "episodes" that would last 2-3 weeks and occur 3-4 times a year. I have the pain always, but that's how the worst of it would go.
I had been travelling to Baltimore for a series of nerve blocks. The last of these was 7 months ago. I have been in constant pain since the last one, which led me to this surgery.
The Clinic had asked my permission to film the procedure. My take on that was kind of two fold. It was a somewhat unusual procedure for them and they also had the idea to use it for teaching purposes. Regardless, I signed off on it. If anyone were to benefit from that, great.
The surgery itself wasn't any big deal to me. Like all of us, I just wanted some help. They could have used a chain saw for all I cared, as long as it helped. I certainly don't need to explain that to any of you.
They inserted 2 wire leads for the stimulation "test." I have no recall of it, but the surgeon told me that they "woke me" twice during the procedure to ask some questions and do some tests. According to him, they were focussed on placement and my reactions. According to him, I said or did the right things to give him confidence that they had it right.
I've followed the protocol they gave me for the transmitters and wires. As I write this now, both transmitters are on a shelf and the wires are taped to my back. My pain is at least 20% worse and I genuinely fear it's permanent. I told the Medtronics people that I am done with it. I did add that if my pain miraculously improved back to "horrible" that I would consider new ideas. My next surgery is scheduled for Friday. That "was" to permanently install the unit. As it stands now, it will be to remove the leads and whatever else is in me and try and figure out what I'll do now. I can't put into words how badly this has gone. I would have accepted that it might not help, but it's pretty devastating to think that it's actually made the problem a great deal worse. I'll be talking to more doctors at the Clinic tomorrow. If something good comes from that, I'll be thrilled. I don't think that's in the cards. I'll end this by repeating that I may well be an example of 1 and I've not seen anything that resembles what's happened with me. Bill
Doing very bad during test phase
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Doing very bad during test phase
Really sorry that you have had such a bad experience Bill, especially when you expect the opposite after any initial discomfort. I haven,t had any experience of the devise so can't comment. I hope this can resolve soon, episodic pain, yes please!! UGH! Let us all know how things work out and don't worry about posting what you are experiencing. Life often isn't pretty.
Take care,
Take care,
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Doing very bad during test phase
Hi Bill W
First of all im sorry to hear that your trial stimulation hasnt given you more then 20% relief and has made you feel your situation is worse.
This therapy is not for everyone as some people do not like the actual sensation, one reason why you may feel worse could be that you are overstimulating the nerve? The secret to stimulation is generally that you should only barely feel the sensation anotherwords its turned down quite low. Maybe thats something to try?
The actual trial does involve quite a bit of surgery so its maybe another cause for your heightened pain levels right now.
May I ask how many implants have this clinic performed in the past year? It does sound like they may not be very experienced in this technique, the success of this therapy is the actual placement of the leads. Do you know where your leads were placed? The trial is always susceptible to movement as the leads are not fixed in place whilst the final implant is fixed to make sure that movement doesnt affect the stimulation.
I have a Medtronic Restore system, its been in me for five years now. My leads are in at L3/4 and then tunnelled to reach S1- S4.
The stimulator is a great help to me, its not a cure and never will be but it does help.
if you would like to email me further about this please do.
Amanda
First of all im sorry to hear that your trial stimulation hasnt given you more then 20% relief and has made you feel your situation is worse.
This therapy is not for everyone as some people do not like the actual sensation, one reason why you may feel worse could be that you are overstimulating the nerve? The secret to stimulation is generally that you should only barely feel the sensation anotherwords its turned down quite low. Maybe thats something to try?
The actual trial does involve quite a bit of surgery so its maybe another cause for your heightened pain levels right now.
May I ask how many implants have this clinic performed in the past year? It does sound like they may not be very experienced in this technique, the success of this therapy is the actual placement of the leads. Do you know where your leads were placed? The trial is always susceptible to movement as the leads are not fixed in place whilst the final implant is fixed to make sure that movement doesnt affect the stimulation.
I have a Medtronic Restore system, its been in me for five years now. My leads are in at L3/4 and then tunnelled to reach S1- S4.
The stimulator is a great help to me, its not a cure and never will be but it does help.
if you would like to email me further about this please do.
Amanda
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Doing very bad during test phase
Thank you, Amanda,
Sorry I haven't been on for a while.
Hard to answer your question about how many. This is the "world famous" Cleveland Clinic. It's the place where I was originally damaged in 2006, but I really spend no time blaming them.
Believe it or not, I have a sense that I might have been their first for PN. I really do. I know they've installed them for bladder issues, back pain and the like. Probably countless times, but again, I think I was the first for this.
I had two leads in me and went through the protocol of one at a time, then both together. The Medtronic Tech had never heard of our problem, but knew some about the pudendal nerve in general.
The settings they gave me weren't high, but what do I really know? They had me play with it in different ways......even going inside for different settings, beyond what they show outside. From a numerical, on the dial standpoint, I don't think I ever went above 3. If I recall, it went to 14. I'd give myself the occasional zap to see if it helped, but never too high or too long.
The increase in pain was very bad when I stopped. It stayed bad for a week and I honestly thought it was permanent. Thankfully, it's returned to unbearable.
I don't have the slighest doubt that it could help some of us and my example is an example of one.
I can promise everyone this - there is more knowledge about PNE here than the entire Cleveland Clinic. Very talented and well intended people, but this escapes them. Bill
Sorry I haven't been on for a while.
Hard to answer your question about how many. This is the "world famous" Cleveland Clinic. It's the place where I was originally damaged in 2006, but I really spend no time blaming them.
Believe it or not, I have a sense that I might have been their first for PN. I really do. I know they've installed them for bladder issues, back pain and the like. Probably countless times, but again, I think I was the first for this.
I had two leads in me and went through the protocol of one at a time, then both together. The Medtronic Tech had never heard of our problem, but knew some about the pudendal nerve in general.
The settings they gave me weren't high, but what do I really know? They had me play with it in different ways......even going inside for different settings, beyond what they show outside. From a numerical, on the dial standpoint, I don't think I ever went above 3. If I recall, it went to 14. I'd give myself the occasional zap to see if it helped, but never too high or too long.
The increase in pain was very bad when I stopped. It stayed bad for a week and I honestly thought it was permanent. Thankfully, it's returned to unbearable.
I don't have the slighest doubt that it could help some of us and my example is an example of one.
I can promise everyone this - there is more knowledge about PNE here than the entire Cleveland Clinic. Very talented and well intended people, but this escapes them. Bill
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Doing very bad during test phase
Are they not able to refer you to someone who has had more experience Bill? Or draft someone in who does? Probably beyond their remit in a 'world famous' hospital, and I am British so don't know the way your system works.
Thanks anyway for educating them
It doesn't do to be rare, I prefere special 
in a medical context does it!
Take care,
Helen
Thanks anyway for educating them
It doesn't do to be rare, I prefere special in a medical context does it!Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Doing very bad during test phase
Thanks Helen,
Actually the Doctor that did the surgery has a colleague in Detroit he's going to contact. I don't know who, but I've got to follow up on that as it will likely be needed as I haven't heard anything yet. He might be waiting for me to recover a bit from what happened, but none of the surgery bothered me and the increase in pain subsided.
That Clinic does a great deal and it's amazing to see the people from all over the world come to it. I think it's mostly for heart and cancer treatments.
I respect all of that, to be sure, but my wife diagnosed me from finding this site. I used the information I learned here to help them diagnose me.
There's more than a little irony in that.
I wish us all well and soon,
Bill
Actually the Doctor that did the surgery has a colleague in Detroit he's going to contact. I don't know who, but I've got to follow up on that as it will likely be needed as I haven't heard anything yet. He might be waiting for me to recover a bit from what happened, but none of the surgery bothered me and the increase in pain subsided.
That Clinic does a great deal and it's amazing to see the people from all over the world come to it. I think it's mostly for heart and cancer treatments.
I respect all of that, to be sure, but my wife diagnosed me from finding this site. I used the information I learned here to help them diagnose me.
There's more than a little irony in that.
I wish us all well and soon,
Bill
Re: Doing very bad during test phase
Contact Kenneh Peters in Michigan. You can find him on the web easily--suppose to be the best in he US
Re: Doing very bad during test phase
A couple of weeks ago I had my "trial" of two wires placed without the advantage of having x-ray guidance. The doctor simply felt of my spine--gave me two shots of lidocaine --and proceeded to insert the wires about two inches above the anal opening. When he finished I was crying like a baby as it hurt so much. Now he wants me to go to the hospital( so he can use x-ray) to have a trial of the wires that have four electrodes on them as it gives you many different programs that you can run. I feel also that this doctor has not had a pne patient and is clueless as to the amount of pain both physical and mental this causes. I have spoked directly to a lady that had the interstim type of unit placed by Kenneth Peters in Michigan and she said that it was life altering. She even got her surgical reports, blacked out her name and gave me a copy. In reading this report you could see that Dr Peters was testing the nerve as he was placing the wires so he knew for sure that he had the wire directly on or at least close to the pudendal nerve. I asked Dr Peters if he knew of anyone else that did the procedure that he does and he said NO--not even in the big hospitals in Boston. He works at the Beaumont Hospital in Michigan and if you type his name for a search several sites will come up. I have this number and I hope it is still correct for him--248-551-0387. Amanda who has the unit on this forum knew somehow that he was the best in the US to do this procedure.