I have just been told by my doctor that the best way to control my facial pain and shocks would be to have a peripheral nerve stimulator fitted. She said its not like a motor cortex stimulator so I was wondering if there is anyone out there who has heard of this and knows what it is and how it works. Its not available in Malta yet but my doctor is trying hard for me to get it as soon as possible. Thanks.
My doc mentioned it. But at the time I was pretty much under control.
Hi Ro,
I have looked up info on this in arizonaclinic and it is exactly what she suggests I have a good idea what it will consist of. I havent heard anything just yet from her as its still not available here in Malta. I will wait and think about it properly before going into it. She did say that before doing it under the skin she will give it to me for a trial period to make sure it works and then if it does she will fix it under the skin for me. She seems to know what she is doing so I trust her. In the meantime I will stay on the meds and find out all I can about it. Thanks. Sue
Ro ~ said:
Hi suzanne,
The person that may be having something like it soon is Sarah Hobbs. Maybe drop her a note? By chance did your doctor give you the information regarding PNS?
As for me, I wouldn’t know if I’d want to do that but my situation is different.
Have you researched peripheral nerve stimulator ? maybe you’ll come across a video or other information that will be helpful.
Ok so i looked it up quickly and this is some of what I found. (not 100% that this is what your doctor is recommending)
http://arizonapain.com/epainbook/peripheral-nerve-field-stimulation…
http://www.jfish.org/doku.php?id=devices:jpns:about
- Muscle physiology, Wikipedia. http://en.wikipedia.org/wiki/Muscle
- Muscle relaxants, Wikipedia. http://en.wikipedia.org/wiki/Muscle_relaxant
- Intubation, Wikipedia. http://en.wikipedia.org/wiki/Intubation
- Pharmacokinetics, Wikipedia. http://en.wikipedia.org/wiki/Pharmacokinetics
- Miller’s Anaesthesia, 5th Edition. Ronald D. Miller (Ed). Churchill Livingstone, 2000.
What is a peripheral nerve stimulator?
A peripheral nerve stimulator, or PNS, is a device used in anaesthesia or intensive care to assess the degree of neuromuscular blockade - that is, the degree to which the normal communication between motor nerves and skeletal muscle1) is blocked by a neuromuscular blocking drug, or ‘muscle relaxant’.2)
A PNS works by stimulating a peripheral nerve with a series of very brief, accurately timed pulses of electrical current. A clinician assesses the resulting muscle movement (twitch), providing an accurate indication of the degree of muscle blockade.
A PNS is typically a handheld, stand-alone, battery-powered device. More advanced monitors are available that incorporate accelerometry to accurately measure the degree of muscle twitch following a stimulation pulse. However, because of the properties of the pulse-patterns used in PNS, determination of muscle blockade using only touch is both accurate and objective. This is the most common way that paralysis is assessed during and after anaesthesia.
Why is neuromuscular monitoring important?
Muscle paralysis (neuromuscular blockade) is often used as part of a general anaesthetic for one of three reasons:
To facilitate intubation of the trachea.3)
To facilitate ventilation by paralysing the diaphragm and muscles of the chest wall.
To facilitate surgery by improving operating conditions.
Although modern muscle relaxants have very reliable kinetics4) that allow an anaesthetist to estimate the duration of action of a relaxant, it is still very important to monitor the degree of paralysis in a patient. This is particularly important in situations where repeat doses are given, or older, less predictable agents are used. In many developing countries, cost and access limit practise to these older agents where offset kinetics are much less reliable, being influenced by disease states, other drugs and individual idiosyncrasies.
Use of a PNS allows an anaesthetist to assess:
The adequacy of muscle relaxation for intubation.
The ongoing adequacy of muscle relaxation for surgery.
The degree to which muscle relaxation has worn-off, allowing the remaining paralysis to be reversed.
The presence of residual paralysis.
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Regardless of what you and your doc decide, I hope it’s what works best for you!
take good care,
Ro ~ xx
Hi Liz,
I am getting all the info about it first. Its not available in Malta yet so I have plenty of time to research it. My doctor said I would really benefit from it as I get between 20-30 shocks a day now and my meds are not helping much. At the moment as they say its just I have to grin and bare it.
Thanks. Sue
Liz K. said:
My doc mentioned it. But at the time I was pretty much under control.
Thanks Ro. I will stay in touch and let you know how I get on.
Ro ~ said:
Hi Suzanne,
I think that’s terrific your doctor communicates things so well and gave options!
The first doctor I had when I got TN to start, told me to look it up on the web when I first got TN.
Best of success,
Ro ~
Suzanne Schembri said:Hi Ro,
I have looked up info on this in arizonaclinic and it is exactly what she suggests I have a good idea what it will consist of. I havent heard anything just yet from her as its still not available here in Malta. I will wait and think about it properly before going into it. She did say that before doing it under the skin she will give it to me for a trial period to make sure it works and then if it does she will fix it under the skin for me. She seems to know what she is doing so I trust her. In the meantime I will stay on the meds and find out all I can about it. Thanks. Sue
Did any of you end up trying this and if so did it work? Innate been researching it now and am very interested. Thanks!!!
Hello, I have the PNS. The Peripheral Nerve Stimulator. It works very well. I got it implanted last summer. I see that this post is from last November, so you may have already received your answer. If you still are needing information please contact me at ■■■■■■■■■■■■■■■
Thanks,
Cheryl
Hi thanks for your replies. I have had a number of trials with PNS but they have not worked or only worked for a few days. In May I will be seeing a specialist from Switzerland who will try me on a trial period of this before considering an implant. At the moment I am taking medication but nothing seems to be helping. I hope this specialist will be able to help.
I Cheryl,
I am being evaluated for a PNS implant. I have had several various procedures including MVD surgery...still suffering with TN. The docs are giving me a phycological evaluation next week, not sure what that means, but if I pass that then they go to battle with the insurance company. How is the PNS working out for you?
Vic Maidhof
Cheryl Lewark said:
Hello, I have the PNS. The Peripheral Nerve Stimulator. It works very well. I got it implanted last summer. I see that this post is from last November, so you may have already received your answer. If you still are needing information please contact me at calewark@me.com
Thanks,
Cheryl
Hi Vic,
The psych test is nothing. The insurance company and your doc want to know if you are serious about getting the stim. I had one and was in the office for 15 minutes just talking to him about the procedure and how excited I was to get it.
I continue to live with my stim. It gave me my life back. Without it I would be in terrible pain. It will not take all the pain away. You need to be aware of that. It has helped me about 50%. I made the mistake in the beginning that it was going
to take all the pain away. Hey....50% is great. I hope your insurance co. will go along with you. You need a good doc that knows how to convince the insurance co. Write good letters and call them too. Let me know how you are doing. Where do you live and where are you getting the stim?
Take care
Cheryl
Hi Cheryl,
Thanks for the reply..I live in San Diego and most of my medical procedures have been performed in San Diego....but to have my MVD I went to the most experienced doctor I could find, Steve Giannotta of UCLA. After the MVD surgery the pain returned full bore in about six months. Giannotta referred me to the pain clinic at UCLA and he works hand in hand with them. I don't have much of a life right now...tegretol and baclofen reduce pain but I have to take quite a bit. After my MVD failed Doctor Giannotta told me I have anesthesia dolorosa (AD) caused by my "atrophied trigeminal nerve. AD is a dreaded condition. If I could have 50% reduction in the sharpness of the pain attacks to my face I would be more than happy so I am crossing my fingers that the insurance company comes through, which they should, and that it works. The pain doctors showed me some of the equipment they install, three, kind of thick wires into my face. They said the first surgery was a test and that wires would be coming out the rear side of my ear and connect to the control. If the machine works then they permanently install the wiring under my skin along with a small rectangular object. I am not quite how it all hooks up or how it works. I was not in the best of shape when I had my visit with the docs.
HI VIC,
What is the doctor's name that is putting in the stimulator? Has he done many. The doc that did mine is an expert in putting them in. I had my trial and it was very successful. My doc does it different than some docs. He feels that the face has to go back to just like it was before the trial. He is concerned about infection. So, I had to wait one month before he would put the permanent one in. I have all 3 leads. They start just above my eye, below my eye, and then to my jaw. They all join together and come down my neck, over the collar bone and then all leads ( wires ) are connected to the generator. The generator is implanted in my chest. I have had it for 2 years now. I would have not made it in this life if I had not gotten it. My AD pain was horrific. I still have a lot of AD pain and still on pain meds....but I am here. I have to adjust the stimulator from time to time depending on the pain. In fact, I just turned it up today. It is very very easy to adjust. You will have a rep from the company that you get. Mine is from St. Jude's Medical Supply.
As far as the surgery goes.......it is a walk in the park. Day surgery. I went shopping after the trial. I was awake during it so I could tell the doc when I felt the stimulator. The permanent was a walk also. I was so excited to get it as I knew it would work. I was awake while they put the wires in and then they put me to sleep to open up an small place for the generator. No pain there after 2 days. The worst part of the entire procedure was waiting the month to get the stimulator. I can't say enough about it. If you have any questions I would be happy to talk to you. You can email me at ■■■■■■■■■■■■■■■ and I can give you my phone number. Take care and I will pray that your insurance will agree.
Cheryl
Vic,
Could you describe to me your pain....how it feels, and where is it? Also, what medication do you take.
Thanks
Cheryl
Hi, I have two types of pain..generally speaking. The first one feels like quick sharp bee stings..around the left side of my face, mostly around the chin, cheek and near the eye...When these get "out of hand" they fire off rapidly all around those areas of my face and that is what brings on the terrible dreaded burning pain deep within. This is the worst pain I fear because I am totally incapacitated. I call this "the attack" and it lasts sometimes up to 40 minutes or so and the pain is so strong it is not possible to put in words. I can hardly breath and cannot swallow..if I try to swallow the burning pain sears deeper. I cannot speak for the pain is to severe. I believe that one of these days, because these attacks are so strong, that it will either cause a stroke or a heart attack. If an attack continued and did not go away I could not live and would not want not to live, it would be impossible. I take 600 to 1000 mgs of tegretol per day and was recently prescribed Baclofen, by the doc who wants to install the stimulator. His name is Dr. Steven Richeimer of Keck School of Medicine UCLA. I would be the 8th patient they have performed this type of surgery on.....They have me scheduled for a phycological interview the Wednesday, the 22nd, then they said they have to convince the insurance company to cooperate and that because the procedure was so new that it would not be easy to convince them. My life is pretty much over right now. I am 63 years old and in good health other then the TN. I just had my first grand child and would love to be around to see him grow up..but I need to beat off these huge attacks if I expect to be around.
Hi Vic…I had a peripheral nerve stimulator that was placed last November. It was absolutely the best thing I have ever tried. My pain was about 75%controlled by the stimulator. I say had because I had felt so good that I had been running quite a bit and had lost 30 pounds. The battery in my chest right below the collar bone apparently was moving while I ran and eventually wore a hole through the skin. I had a nasty infection settle in so I had to have it all removed…my miracle was taken away temporarily…I had to have a couple weeks of iv antibiotics and a couple more weeks of oral antibiotics. Then wait to be sure the infection was gone. I am scheduled for reimplantation on Sept 10 I had 3 wires in my face. One above the eye, one below the eye and one to the corner of my mouth. The stimulator controled my eye pain and nose pain but, not my teeth so I was still on some meds…but, I had been very comfortable for months…I was back to work and had my life back after 5 years of hell!! I am looking forward to getting it back, I haven’t been able to work and my pain has been crazy out of control…I have TN type 2b…with all 3 branches of the nerve involved…so I have Sharp electrical pain and a deep burning pain that never goes away…hope this helps u decide…I had already went through an unsuccessful MVD and multiple nerve blocks that didn’t work…the insurance company wants proof that u have tried other conventional treatments first…
Hi Lisa, I too have had multiple nerve blocks and unsuccessful MVD..I was just reading the ad on this site for the Skullbase Institute...Endoscope vs Microscope surgery. My MVD surgeon is convinced that my trigeminal nerve is so beat up that there is no sense in having a second MVD....but reading that Skullbase Ad makes me wonder....Your veteran TN fighter just like me. Luckily I don't have the burning pain all the time, only during really big attacks. Do the wires in your face feel weird and can you see them through the skin ? The docs showed me three wires and a small object that they implant. How do you turn the implant on and off ?
U couldn’t see the wires in my face at all and they didn’t bother me at all…The wires come together behind the ear and then a central wire runs down the neck into the battery box. I could see the wire in my neck but, everybody said they couldn’t see it…the battery is like 2inches x 3inches and it does look like a small bump in the chest and of course u can see the incision scar in the chest area… once everything was healed I didn’t even think about it…that’s how comfortable it was. There is a controller that u place over the battery to turn it on/off and adjust programs…there could literally be thousands of programs with all the combinations of electrodes…each of my wires had 8-16 different electrodes on them…I had to charge the battery about every 2 weeks…there is a charger that u use a sticky patch to connect…it takes about 4 hours to completely recharge it…so worth the pain relief I had…I’m bummed because the surgeon said he won’t put the battery back in my chest because there isn’t enough fat to bury it in so it will have to go in my back or stomache this time…still trying to decide…
Lisa26 said:
U couldn't see the wires in my face at all and they didn't bother me at all..The wires come together behind the ear and then a central wire runs down the neck into the battery box. I could see the wire in my neck but, everybody said they couldn't see it..the battery is like 2inches x 3inches and it does look like a small bump in the chest and of course u can see the incision scar in the chest area.. once everything was healed I didn't even think about it..that's how comfortable it was. There is a controller that u place over the battery to turn it on/off and adjust programs..there could literally be thousands of programs with all the combinations of electrodes..each of my wires had 8-16 different electrodes on them..I had to charge the battery about every 2 weeks..there is a charger that u use a sticky patch to connect..it takes about 4 hours to completely recharge it..so worth the pain relief I had..I'm bummed because the surgeon said he won't put the battery back in my chest because there isn't enough fat to bury it in so it will have to go in my back or stomache this time..still trying to decide..side note..I saw Dr. Sekula in Erie,Pa..he worked directly with Dr. Janetta, creator of the MVD surgery..he strongly suggested I never have another procedure that would further damage the nerve..he said my pain would be worse..
Yesssss it works for me wonderful feel free to friend me and see surgery pics etc I have my life back even returned to work after three years will answer any questions u have
Cheryl,
Good morning...This is Vic's wife Karen. He is not doing so good again today so he asked me to read this discussion and reply.
The Dr. he is seeing is Stephen Richmeier, head of the USC Pain Center at the USC Keck Medical Center. He has done several of these procedures with good results. (So far) He was very up front with us about how it may or may not work. He also added baclofen to his meds with the hope that it would help the tegretol in preventing more shocks. He started the new medication one week ago today and he has gone back to bed so I don't think it is helping at all!
On a good day, Vic's pain consists of several electrical shocks in his left jaw, extending upward. On a bad day, the shocks come and go so much that he is afraid to even move or eat etc....The last several days have been bad days.
Thank you for taking the time to answer him. This is the first hope that we have had in over a year. I pray that they are able to pull this off and the sooner the better.
May I ask where you had your surgery done? It sounds like you have had some good results and I am praying for the same for Vic,
Regards, Karen