Neurostimulator Patient

Read about the latest Technology, which Doctors are performing this technique and the advantages and disadvantages of this cutting edge pain management therapy.

Re: Neurostimulator Patient

Postby pdn » Sun Aug 14, 2011 3:10 pm

hi, in boston area, dr. Valovska is recommending a neurostimulator trial for me; and states that there are no mobility rrestrictions as she does not place electrodes thru lumbar area but lower, maybe sacral area. she's only recently tried a few of these with one or so success; wondering what others think about this?? thanks, pdn
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Re: Neurostimulator Patient

Postby Grammy » Mon Aug 15, 2011 12:38 am

I would find someone who has done many of these procedures if I were you.
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Re: Neurostimulator Questions

Postby Richard » Sat Dec 17, 2011 6:06 am

Hello Amanda:

My name is Richard and I live in the U.S. I have had PNE for about 5 years. My pain is exacerbated from sitting too long. I have been taking pain meds for 5 years which in turn causes constipation which I also have to battle. I applied for a stimulator about 4 years ago but my insurance turned it down as being "too experimental." However, I have not ruled it out altogether but I am hoping that maybe you could help me as I am thinking that if I can find people who have had this procedure done successfully, perhaps that might help my case. I would very much appreciate chatting with you more about it, Thank you!

Richard
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Re: Neurostimulator Patient

Postby Amanda » Sat Dec 17, 2011 4:59 pm

Pdn

The main thing to remember when having a Stimulator Trial or implant is that it is a life changing therapy and one that is normally at the end of th line after many other therapies have been tried and failed.
No matter where they place the leads there is always a mobility issue which never goes away and many activities are not permitted including many medical treatments like MRI etc.
When a doctor places the leads into the lumbar region it is generally a more secure way of getting the stimulation to the right area with much less chance of lead migration - thus losing the stimulation effect. This is the reason why many doctors are using the retrograde approach to secure the leads rather than the previous Sacral Nerve Stimulation techniques.
The most important thing when going to any doctor for a Stimulator is that they have experience in doing this procedure many times over and not just occassionally.

Richard

Many insurance companies are not always approachable to fund a Stimulator, however with many more published papers on the positive effects of Stimulation and the varying reports on its use for many types of pain I believe many are willing to pay for this treatment.
The best way to get your Insurance to review the situation is to have your application verified by a Pain Specialist who is familiar with the treatment procedures, benefits and publications etc.
I had to wait many years before i had my Stimulator, I had to go through the motions of many failed treatments before it was deemed to be the only route forwards for me; I would have preferred to have had the Stimulator years beforehand but it was not my decision.

I hope that this helps if anyone has more questions then please feel free to ask.
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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Re: Neurostimulator Patient

Postby smileygram » Sat Dec 17, 2011 10:36 pm

Hi, Amanda

I would like as much information you are willing to supply. I would like to know how the trial period was for you. Also, any information about the surgery, how long was the rehab, and how much help you needed and for how long after you got home. What kinds of limitations do you have on a daily basis ? Also, the type and duration of pain during the trial period and also after the implantation? How much pain relief do you have? I am going for a screening appointment in January at the University of Michigan. It is supposed to take between 3 and 4 hours. I have a lot of family there. I live in Alabama. I have not received the packet that they sent out yet. Also, where is your implant? Why did you have the surgery in France. Thanks. Hope to hear from you soon.

Debbie
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Re: Neurostimulator Patient

Postby Amanda » Sun Dec 18, 2011 12:59 am

Hi Smileygram

im happy to answer any questions about my Stimulator. It certainly is a strange therapy to help with pain so many people have no idea how it feels or what is involves, I wish that there was a pain centre that had a specialist who knows what it fels like to hve a stimulator!
The truth is that they rely on patients feedback which is not written in any textbook.
The trial period is tricky, you feel the sugical effects yet want ot know the effects of the stimulation, the secret is to have a trial that last as long as possible. Mine was for 6 weeks which I know is unusual but I stayed in Belgium for the entirety trying to live a normal life for the duration. It was the best decision as it gave me a great insight as to how the stimulator would work for me. The initial pain fromt he surgery wore off after about three weeks giving me time to reflect and recognise that it was a good option for me. Once I was implanted it took me about four months to get over this surgery before I knew it was the right thing to do. I have my limitations even now but I have learned to live with them. If you would liek to email me offline feel free to do so.

Here are some excerpts from my experiences:

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.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.
Amanda


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

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".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 pelvic/ S-I joint dysfunction.
80% better from PT, correction of joint dysfunction, & meds: neurontin, valium, nortriptyline.
S2 tarlov cysts remain. Functional is nice but cured is preferable.
Tarlov cyst surgery with Dr. Frank Feigenbaum OK'ed, will be scheduled for late 2011 or early 2012.HerMajes

Hi HerMajesty

I will try to address your other issues regarding Stimulation:

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".

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.

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 enable

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 woul

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Hi June Wish


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.

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.
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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Re: Neurostimulator Patient

Postby Amanda » Sun Dec 18, 2011 1:04 am

I have to update my current situation, after my visit to Belgium in August, I now have four programmes...one for sitting, one for standing, one for lying flat in bed and one for lying on the couch whilst watching tv where I am perched on my couch with pillows. Its a case of ABCD hahah i hope I wont make it to Z!!
I can control the settings so that im more comfy in every position which is great.
I still take mostly the same meds and use ice 24/7 but I can manage my pain without any tears or total frustration....its not total living but I manage and I am more happy than I have been in many years...of course I would love to do lots more physically but this is the way it has to be.
Having a stimulator is a great help but it not a miracle and every pain specialist will tell you the same thing....but it is my best friend.
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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Re: Neurostimulator Patient

Postby Richard » Tue Dec 20, 2011 4:36 am

Thank you Amanda for responding to my inquiry. I appreciate your help. Yes, I would think that as more people are allowed to try the implant successfully I would hope that the insurance companies would become more open to the procedure (especially if it were they that were in constant pain). Any other help anyone can offer in terms of insurance companies that have actually paid for the procedure would help me greatly. Thanks to all.

Richard
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Re: Neurostimulator Patient

Postby Amanda » Fri Dec 23, 2011 1:10 am

Richard

My Trial and implant were paid for by the VHI in Ireland and also the HSE.
I was lucky in that my Pain Specialist in Ireland knew Dr Van Buyten and knew that he was the best person to go to have this treatment so she wrote a very favourable application for me. She ahs refused to replace my battery in Ireland due to MRSA complications and has applied with funding to allow me to return to Belgium every year ever since.
I respect this decision in favour of my own wellbeing.
These applications require huge dedication and many emails and phone calls to come to fruitition however I prefer to be in the right place and with the right doctor.

Hang in there and be patient please.
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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Re: Neurostimulator Patient

Postby JBROWN » Fri Feb 10, 2012 7:56 pm

hello, my name is jeff brown and i have had PNE for 30 years and i cannot wear pants because the waistband causes unbearable pain. i have worn bib overalls for the past 27 years. i am scheduled for a spinal stimulator on 2-13-12. was wondering if anyone else shared this unusual symptom. i also can't sit more than 5 minutes in a soft chair as well as the other common symptoms.
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