Hi Everyone
I am the recipient of a Medtronic Restore Neurostimulator, this was implanted three years ago.
While it is a limiting device to live with it has huge advantages and has been a help in enabling me to live with my pain; as I am very sensitive to medications with adverse side effects the Stimulator has allowed me to manage my pain without side effects.
If you would like to know more about this cutting edge treatment of pain, please feel free to ask me any questions.
Neurostimulator Patient
Neurostimulator Patient
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.
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Neurostimulator Patient
Hi Amanda,
To continue our conversation from the previous Board, what linitations do you find this device has caused you?
Thanks
To continue our conversation from the previous Board, what linitations do you find this device has caused you?
Thanks
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: Neurostimulator Patient
Hi Hermajesty
At last I get to continue our conversation....!!!
There are many limitations to having an implanted Stimulator:
1. Medical Restrictions - There are many medical procedures which are no longer available as they will interfere or damage the Stimulator.
They include: MRI Scans, Defibrillation, Electrocautery, Lithotripsy, Ultrasound ( not within the region of the Stimulator).
2. Dental Restrictions: - Some dental equipment may interfere with the Stimulator.
3. Security Devices - Airports and shop security systems can damage your stimulator.
Therefore it is vital to inform airport security staff that you have an implanted device - you cannot go through the normal scanners as anything magnetic will render the stimulator useless and may cause internal burning. So when I travel I always have letters from my doctors and Special ID cards from Medtronic explaining my implant restrictions. I have only once encountered a difficulty with this and told the person to go ahead and telephone Medtronic and see if I was telling the truth - then they believed me.
4. Recharging - my stimulator needs to be recharged every month, this is relatively simple to do by wearing a belt with a charging device - while it is tight to ensure a good contact it does not hurt....but it does get hot after a while!!!
5. Personal Restrictions - I find that because the Stimulator is implanted near to my waistline that some clothing rubs on it and is not comfortable so I find I have to wear skirts that are loose so that I avoid this happening. I also wear a SOS Talisman Emergency Bracelet to alert anyone in the event of an accident of the Stimulator and the restrictions involved.
If you are driving a car, it is important to turn off the Stimulator as bumps on the road or sudden surge in power may cause you to shift or press the pedals wrongly and this would invalidate your Insurance.
Lying on the side where the Stimulator is not comfortable as the box is cumbersome and it shifts inside and is not at all a nice feeling.
While the limitations seem endless the benefits are even greater so this type of treatment if it works for your pain is well worth the try....I wish I had tried it many years ago.
I hope this has been helpful.
At last I get to continue our conversation....!!!
There are many limitations to having an implanted Stimulator:
1. Medical Restrictions - There are many medical procedures which are no longer available as they will interfere or damage the Stimulator.
They include: MRI Scans, Defibrillation, Electrocautery, Lithotripsy, Ultrasound ( not within the region of the Stimulator).
2. Dental Restrictions: - Some dental equipment may interfere with the Stimulator.
3. Security Devices - Airports and shop security systems can damage your stimulator.
Therefore it is vital to inform airport security staff that you have an implanted device - you cannot go through the normal scanners as anything magnetic will render the stimulator useless and may cause internal burning. So when I travel I always have letters from my doctors and Special ID cards from Medtronic explaining my implant restrictions. I have only once encountered a difficulty with this and told the person to go ahead and telephone Medtronic and see if I was telling the truth - then they believed me.
4. Recharging - my stimulator needs to be recharged every month, this is relatively simple to do by wearing a belt with a charging device - while it is tight to ensure a good contact it does not hurt....but it does get hot after a while!!!
5. Personal Restrictions - I find that because the Stimulator is implanted near to my waistline that some clothing rubs on it and is not comfortable so I find I have to wear skirts that are loose so that I avoid this happening. I also wear a SOS Talisman Emergency Bracelet to alert anyone in the event of an accident of the Stimulator and the restrictions involved.
If you are driving a car, it is important to turn off the Stimulator as bumps on the road or sudden surge in power may cause you to shift or press the pedals wrongly and this would invalidate your Insurance.
Lying on the side where the Stimulator is not comfortable as the box is cumbersome and it shifts inside and is not at all a nice feeling.
While the limitations seem endless the benefits are even greater so this type of treatment if it works for your pain is well worth the try....I wish I had tried it many years ago.
I hope this has been helpful.
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.
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Neurostimulator Patient
Thanks;
I had a conversation with someone else on the Board who also had one, and her experience which concerned me even more seemed to be a restriction in mobility - such as bending and reaching, so the wires would not be displaced. This concerned me a lot more than everything you listed, because I just assumed I would wind up dislodging them eventually as I am an active person, not athletic or anything but sexually active, and playing n the floor with the kids, and cleaning the house including bending to pick things up off the floor, and stuff like today I am painting the bathroom including climbing up & down the ladder & bending down to reach the paint can which is on the floor...in your experience would this kind of lifestyle need to be seriously modified to keep the wires in the right place? That would be a deal-breaker for me; I am not willing to become "delicate".
I had a conversation with someone else on the Board who also had one, and her experience which concerned me even more seemed to be a restriction in mobility - such as bending and reaching, so the wires would not be displaced. This concerned me a lot more than everything you listed, because I just assumed I would wind up dislodging them eventually as I am an active person, not athletic or anything but sexually active, and playing n the floor with the kids, and cleaning the house including bending to pick things up off the floor, and stuff like today I am painting the bathroom including climbing up & down the ladder & bending down to reach the paint can which is on the floor...in your experience would this kind of lifestyle need to be seriously modified to keep the wires in the right place? That would be a deal-breaker for me; I am not willing to become "delicate".
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: Neurostimulator Patient
Hi HerMajesty
I will try to address your other issues regarding Stimulation:
Bending forwards may case the Stimulator to flip inside you and it is not comfortable to brush against it at all; so it is a balancing act.
After the initial period of time you are permitted to do most things, however everyone is different. But most doctors will insist that you dont play contact sports, or do strenuous physical activities such as anything that involves carrying weights.Having said that you will have to bear in mind that having a foreign body in your body is always going to be there and there may be movements which make you tweak a little or a lot. I find this many times without having done very much.
The main thing to remember, is that your lifestyle may have to be modified to accomodate the stimulator, however if this also means that you have less pain and a better outlook on life then that is a good thing.
Some people have continued with contact sports, their leads have moved and they have ended up having it all removed. It is a very fine line to be honest but if your condition is debilitating enough prior to stimulation you will endure any limitations to gain benefits from a Stimulator.
I will try to address your other issues regarding Stimulation:
1. Initially when the Trial and Implanted Stimulator is put in there are huge mobility restrictions which are aimed to prevent migration of the leads. Putting arms over shoulder height and bending forwards are totally forbidden as is carrying anything over 5lbs - this is usually recommended for at least 6 months to allow the leads to be firmly established and set into the tissues adequately so that they wont move.I had a conversation with someone else on the Board who also had one, and her experience which concerned me even more seemed to be a restriction in mobility - such as bending and reaching, so the wires would not be displaced. This concerned me a lot more than everything you listed, because I just assumed I would wind up dislodging them eventually as I am an active person, not athletic or anything but sexually active, and playing n the floor with the kids, and cleaning the house including bending to pick things up off the floor, and stuff like today I am painting the bathroom including climbing up & down the ladder & bending down to reach the paint can which is on the floor...in your experience would this kind of lifestyle need to be seriously modified to keep the wires in the right place? That would be a deal-breaker for me; I am not willing to become "delicate".
Bending forwards may case the Stimulator to flip inside you and it is not comfortable to brush against it at all; so it is a balancing act.
After the initial period of time you are permitted to do most things, however everyone is different. But most doctors will insist that you dont play contact sports, or do strenuous physical activities such as anything that involves carrying weights.Having said that you will have to bear in mind that having a foreign body in your body is always going to be there and there may be movements which make you tweak a little or a lot. I find this many times without having done very much.
The main thing to remember, is that your lifestyle may have to be modified to accomodate the stimulator, however if this also means that you have less pain and a better outlook on life then that is a good thing.
Some people have continued with contact sports, their leads have moved and they have ended up having it all removed. It is a very fine line to be honest but if your condition is debilitating enough prior to stimulation you will endure any limitations to gain benefits from a Stimulator.
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: Neurostimulator Patient
Amanda,
I am excited to hear you have had the pudendal nerve interstim. Correct? The pudendal nerve one? I am scheduled to have one as well. I have the trial one in right now and it has decreased my pelvic pain and burning. However I still have a problem with URGENCY - I feel like I have to pee but there is nothing in there. What types of pain are you still having with the interstim and what types of pain has it helped to decrease???? If you could respons AS SOON AS YOU POSSIBLY CAN - I would very much appreciate it.
JuneWish
I am excited to hear you have had the pudendal nerve interstim. Correct? The pudendal nerve one? I am scheduled to have one as well. I have the trial one in right now and it has decreased my pelvic pain and burning. However I still have a problem with URGENCY - I feel like I have to pee but there is nothing in there. What types of pain are you still having with the interstim and what types of pain has it helped to decrease???? If you could respons AS SOON AS YOU POSSIBLY CAN - I would very much appreciate it.
JuneWish
Re: Neurostimulator Patient
God love you, Amanda, for all you have been through and all you do for others. 
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: Neurostimulator Patient
Hi June Wish
I was implanted with a Medtronic Restore Neurostimulator - the leads for this are placed at L3/4 and are tunneled to stimulate S1-S4.
Im not sure if you have the same type of stimulator or not.
The Trial period is not always indicative of the end results of the implanted Stimulator as during the Trial the leads are not fixed and can migrate causing not such good stimulation and not accurate stimulation; the implanted one is fixed so the areas to be stimulated generally react more kindly.
My Stimulator has three different settings, so when I am sitting, Lying or standing/walking I use a different setting which stimulates different areas.
It helps me with pelvic pressure and frequency so long as I dont sit very much at all.....sitting for me brings everything back to a higher level instantly.
So to answer your question i still have the same pains with the Stimuator but they are less at times depending on my activity.
I still use ice almost 24/7 and take the same medication as pre stimulator. I suppose you could say that the stimulator has helped to desensitise my pain awareness without taking it away totally...does this make sense?
When on my recent checkup in Belgium, my doctor was able to read my living arrangements by my Stimulator settings - I lie most of the time, then stand and lastly at only 2% I sit so it does make me realise that the Stimulator is not a cure for pain on sitting and I dont have a normal life at all; but Im happy at the moment.
Celeste
If I would be able to have a signature like yours I would be singing from the rooftops....thanks for you kind words.
June WishI am excited to hear you have had the pudendal nerve interstim. Correct? The pudendal nerve one? I am scheduled to have one as well. I have the trial one in right now and it has decreased my pelvic pain and burning. However I still have a problem with URGENCY - I feel like I have to pee but there is nothing in there. What types of pain are you still having with the interstim and what types of pain has it helped to decrease???? If you could respons AS SOON AS YOU POSSIBLY CAN - I would very much appreciate it.
I was implanted with a Medtronic Restore Neurostimulator - the leads for this are placed at L3/4 and are tunneled to stimulate S1-S4.
Im not sure if you have the same type of stimulator or not.
The Trial period is not always indicative of the end results of the implanted Stimulator as during the Trial the leads are not fixed and can migrate causing not such good stimulation and not accurate stimulation; the implanted one is fixed so the areas to be stimulated generally react more kindly.
My Stimulator has three different settings, so when I am sitting, Lying or standing/walking I use a different setting which stimulates different areas.
It helps me with pelvic pressure and frequency so long as I dont sit very much at all.....sitting for me brings everything back to a higher level instantly.
So to answer your question i still have the same pains with the Stimuator but they are less at times depending on my activity.
I still use ice almost 24/7 and take the same medication as pre stimulator. I suppose you could say that the stimulator has helped to desensitise my pain awareness without taking it away totally...does this make sense?
When on my recent checkup in Belgium, my doctor was able to read my living arrangements by my Stimulator settings - I lie most of the time, then stand and lastly at only 2% I sit so it does make me realise that the Stimulator is not a cure for pain on sitting and I dont have a normal life at all; but Im happy at the moment.
Celeste
If I would be able to have a signature like yours I would be singing from the rooftops....thanks for you kind words.
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.
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Neurostimulator Patient
Did you try a TENS 1st? Now I am leaning towards that instead. I just am too much improved already to accept the lifestyle restrictions. I want to get off meds, but the restrictions sound worse than the meds. But, I would dearly love to try electric stimulation as I have never experienced it and wonder how it would work for me. Do you think TENS is comparable at all (like did you try it and get a positive outcome but less so), or do the two things, neurostimulation unit and TENS, have nothing in common?
I am so grateful for this board and all of you: My Docs made this sound like no big deal and I managed to avoid something I would have been very unhappy with; by coming to you guys for info. I really appreciate your sharing your experience Amanda
I am so grateful for this board and all of you: My Docs made this sound like no big deal and I managed to avoid something I would have been very unhappy with; by coming to you guys for info. I really appreciate your sharing your experience Amanda
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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florabunda
- Posts: 11
- Joined: Tue Sep 21, 2010 10:44 pm
Re: Neurostimulator Patient
Hi Her Majesty
I do not have a pudendal nerve problem but my partner has. With scs implant you have to realise the risks of implantation and the inconveniences that ensue. I read that you have an active life already and maybe scs is not for you as it is invasive and has restrictions in its own right. Some are easy to get used to and some not. I would advise that pain and inconvenience have to be balanced. Scs is particularly good at relieving urinary and bowel disfunction and pain also but to a lesser degree. I have found it a pain relief not a pain cure. My scs is implanted for different reasons at different lead levels (T10) as for PNE but the physical intrusion is the same. If you have not tried TENS it is a starting point but they are not the same at all. The common denominator is amps to the neves...different amps to different nerves. Scs is mor intrusive, more complicated and less retractable. I wsh you luck with finding your solutions. I am new to this site as the site appears new as well. I am happy to give my experiences of scs. I wish the site every success too. Pain and distress needs comarades.
I do not have a pudendal nerve problem but my partner has. With scs implant you have to realise the risks of implantation and the inconveniences that ensue. I read that you have an active life already and maybe scs is not for you as it is invasive and has restrictions in its own right. Some are easy to get used to and some not. I would advise that pain and inconvenience have to be balanced. Scs is particularly good at relieving urinary and bowel disfunction and pain also but to a lesser degree. I have found it a pain relief not a pain cure. My scs is implanted for different reasons at different lead levels (T10) as for PNE but the physical intrusion is the same. If you have not tried TENS it is a starting point but they are not the same at all. The common denominator is amps to the neves...different amps to different nerves. Scs is mor intrusive, more complicated and less retractable. I wsh you luck with finding your solutions. I am new to this site as the site appears new as well. I am happy to give my experiences of scs. I wish the site every success too. Pain and distress needs comarades.