Motor Cortex Stimulation

[MarleneW]

I saw my surgeon yesteday, the pain that I had my last surgery for is still there, not much has changed. I am going for rehab now to try to get some range of motion back in my neck. My surgeon had me see a partner of his yesterday, he deals with the motor cortex stimulation. He said we are going to see what the next 6 weeks brings with the therapy. Have any of you had the motor cortex stimulation done or does anyone have any good info about this. A huge decision to make.
Thanks so much,
Marlene

[Fizzbw]

No but it is something that I am interested in. I have been told that it is less good for the paroxysimal pain (stabs) than for any kind of prolonged pain - its been used to some success for anesthesia dolerosa which is why I am keeping my eye on it!

The thing to do is to get as much information as you can on every aspect of it - its still a fledgeling science remember. Information is not commiting yourself and if you don't feel comfortable you can wait to see how the process develops. It could be a very interesting thing.

I saw a pain specialist last week at hospital who mentioned it briefly - she seemed to think that on balance it was less effective, but several people with recalcitrant TN, atypical or anesthesia dolerosa had indeed benefited.

Can you let us know what the dr says - its something that could be very valuable to know about!

Hugs to you

Niki ***

[MarleneW]

Niki,
I will let you know what the neuro says when I go back in December. I am kind of anxious about the therapy for my neck. I had physical therapy before for the TN and ON and it only seemed to make things worse.
I plan on taking my time with the motor cortex decision, I want to get all the info I can, I'm wondering if there are any gathered statistics on what kind of pain it helps with, to what degree it helps, and of those that have had it done - has it helped long term.
I'm not ready for another surgery yet, I will give this one a good chance to heal to see what the results will end up being. I also realize the longer I wait the more scientific research will be done and maybe even better techniques of doing the procedure will be discovered.
This is a big decision to make so I will take my time if I can. I don't have too good of a track record with medications, but maybe something along that line will come up that will agree with me more than the ones in the past I have tried.
Still it is good to know that there is something out there to look into in the future and that they aren't just giving up on me.
Hope you are still feeling a little better every day, I am hoping for the best for you.
Marlene

[JeanC]

Hi, Marlene,

Just a quick note now to tell you I don't remember anyone in the family here who has had Motor Cortex Stimulation, but we do have a few who've had other stimulators implanted and they had a friend who had the MCS. I hope they'll be along soon with some pointers for you on those and on the MCS as they had posted several websites on both in the Useful Websites and Newbie stickies before the crash. I tried looking through the Google cached archives for them and couldn't come up with much. OHSU has a little info - http://www.ohsu.edu/facialpain/progress.shtml has links to Trigeminal and Motor Cortex Stimulation. Facial-neuralgia.org had some info - in the personal stories, I think (they were gone for a while, but they're back! http://facial-neuralgia.org/ ) neuro-stimulation info at - http://facial-neuralgia.org/treatments/surgical/neurostimulation.html

It is relatively new so you're wise to take your time and do your research. It is looking hopeful for at least partial relief of the more constant pain of hard to treat non-classic cases and deafferentation pain. I read an article about it in a Toronto paper last spring but that's been archived online. (Ella, did you get a hard copy?) They didn't say TN in the article but the subject's description seemed to fit TN.

Will post again if I find the links. And there have been presentations at the TNA conferences I've attended so will see what I can find in those, too. Good luck and keep searching!

Jean

[ella138]

It is relatively new so you're wise to take your time and do your research. It is looking hopeful for at least partial relief for non-classic cases and deafferentation pain - the more constant pain. I read an article about it in a Toronto paper last spring but that's been archived online. (Ella, did you get a hard copy?) They didn't say TN in the article but the subject's description seemed to fit TN.

As a matter of fact I did.
Here it is.

Unending pain meets electric brainstorm
Electrode implanted inside skull deadens the signals from nerves
by UNNATI GANDHI
Jen Dafoe pinpoints the moment she collapsed in the coffee aisle of a grocery store a year ago as the lowest in her life -- as an excruciating pain ran up the left side of her face.
"I was on the floor rocking my head in my hands and people were walking by looking at me," recalls the 41-year-old who suffers from a rare disorder that, for two years, felt like her jaw was "rotting" in her face. The pain prevented her from venturing too far from her room in Brights Grove, Ont.
"I couldn't even go to the store to buy a loaf of bread. My life revolved around dealing with the pain, minute by minute."
After undergoing 21 different reconstructive and jaw surgeries, "taking every medication under the sun," attending a pain clinic and even trying physiotherapy, Ms. Dafoe was presented with the option of going under the knife once more.
But this time, it would involve drilling a hole into her skull and implanting a five-centimetre-wide electrode strip on the brain's protective dura membrane. The idea is to send electrical signals through the dura to the motor cortex -- the region of the brain that controls movement in the face and other parts of the body and processes sensory input from nerves in those areas. A wire connected to the electrode strip would run under her skin and be attached to a battery-powered, programmable device about the size of a pager that would sit just below the collarbone. The device would send tiny, imperceptible shocks to the motor cortex, stimulating it and intercepting the pain signal coming from the nerves on the left side of her face.
After the surgery and a two-week trial run last November, Ms. Dafoe walked out of the London Health Sciences Centre pain free.
"The minute it was on, there was instant relief," she recalled.
The surgery is similar to a process called deep brain stimulation that has been used to treat patients with Parkinson's disease and depression, but instead of implanting electrodes deep inside the brain, it sits on the outside. It is part of a growing trend to treat neurological disorders with electricity that don't respond to traditional treatments.
A handful of neurosurgeons across Canada are launching the country's first clinical study on the procedure. Doctors have seen it reduce pain in about half the patients, such as Ms. Dafoe, for whom nothing else had worked.
"We're a relatively unique group of neurosurgeons here in Canada, we meet on a regular basis, and we're more amenable to a large study of this kind, the type you don't see carried out in the U.S.," said Andrew Parrent, the neurosurgeon in London, Ont., who performed Ms. Dafoe's latest operation, and who is leading the clinical study. (Smaller U.S. studies tend to involve just the patients of one physician.)
The study is aimed at determining who is best suited for motor cortex stimulation and how well it works. Doctors are in the process of recruiting patients with post-stroke pain, neuropathic pain and neural pain in the upper body.
"Because we have so few treatment options for these types of pain, this study, if it shows that it's beneficial, will be able to increase awareness among pain-treating physicians," Dr. Parrent said.
Fewer than two dozen patients in Canada have received this treatment in the past two years.
As for Ms. Dafoe, she has started working again and is hoping to pursue a master's degree.

Zap goes the agony (This was beside the diagram of how the implants are placed)
Surgeons are now using implanted electrical devices to treat chronic pain patients who don't respond to conventional treatments.
An electrode is surgically implanted on the dura, a protective membrane covering the brain. A thin wire, running under the skin, connects the electrode to a battery-powered "neurostimulator" implanted near the collarbone.
The electrode emits an electrical signal which passes through the dura to the motor cortex, the region of the brain governing movement and sensations. The stimulation of the motor cortex also seems to have an effect on deeper areas of the brain. For reasons which are not fully understood, the electrical activity seems to dampen the sensation of pain.
SOURCE: STANFORD UNIVERSITY MEDICAL CENTER

[MarleneW]

Thanks so much Jean and Ella. I don't have typical TN. I have trigeminal neuropathic pain. I had a tooth extracted 6 years ago by supposedly a very good oral sugeon, but he didn't do a very good job. The extraction took 2 hours and then the bleeding didn't stop for 4 days. The pain started immediately after the novacaine wore off. I have constant boring, deep, burning pain. My right ear even turns bright red almost purple 6 or 7 times a day. I use an ice pack to get to sleep at night. The inside of my mouth including my tongue feels like I have just taken a drink of something really hot ,this is constant also. The bones in my face feel all the time like I might have a really bad bone infection,but I don't. I have 9 teeth that feel constantly absessed.I then ended up with the ON after my 1st MVD. From what I have been reading the motor cortex stimulation might work for this type of pain.
If you hear of any other information on this subject I would really appreciate it if you would share it with me.
Thanks so much.
Marlene

[Fraalan]

Great read. I was going to start a thread on this a few days ago.
My surgeon in at UPMC Pittsburgh said this was experimental at the moment but it was an option. Interesting indeed.

[JeanC]

Facial-neuralgia.org (http://facial-neuralgia.org) website is back - neuro-stimulation info at - http://facial-neuralgia.org/treatments/surgical/neurostimulation.html. This has a link to more info and links on motor cortex stimulation. And back on the facial-neuralgia home page there's a link to Bridget Kelly's story (under "MOTOR CORTEX STIMULATION Read about one woman's experience with Motor Cortex Stimulation (http://facial-neuralgia.org/treatments/surgical/motor_cortex_stimulation.pdf) to relieve her facial pain) - that's the person I mentioned in my previous post who has had an MCS implanted.

[MarleneW]

Jean,
Thanks for the information, I'm going to look at it all. If you can think of anything else, you know it will be much appreciated.
Marlene

[MarleneW]

Jean,
I read the story about Bridget Kelly. Very interesting and inspiring, a lot of info there that I wasn't aware of. Have you or anyone heard how Bridget is doing recently? I wonder if the MCS is still working for her?
Thanks again,
Marlene

[JeanC]

Jean, ... Have you or anyone heard how Bridget is doing recently? I wonder if the MCS is still working for her?
Hi, Marlene,

No, I haven't heard. Kim/KIMMERS might have. Or Bridget put an email address at the top of her story - why don't you try emailing her directly?

If you can get to the TNA Conference in 2008 (in Detroit) you can get a lot of good info first hand. There were presentations on MCS at the last two conferences and peripheral and spinal stimulators at this last one as well. Or keep an eye out for regional conferences in the meantime - they're just as good, though generally only 1 day so they can't cover as much. Is there a support group near you (lists downloadable from TNA website)? That's also a good place to get info. Or call the TNA and ask for people with MCS willing to network - they have a list of such people, according to my support material.

Jean

[MarleneW]

Jean,
I found a very interesting website this morning. It's www.opuslinks.com. It's a very informative and interesting website founded by Bridget Kelly. Anyone interested in any kind of nerve stimulation should check this out.
My husband and I were planning on attending the TNA conference in Oregon but my surgery was too close to that date and to tell you the truth I am afraid of flying, we do go to the suppport group meetings when we can in Pittsburgh but the subject of MCS hasn't been addressed at the ones we have been to. I will have to ask at the next one I attend.
Thanks for your help and advice.
Marlene

[KIMMERS]

Hi Marlene,

Bridget MCS is still working well for her. She goes in about ever 6 months and has it reprogrammed. I know from personally talking with her, she said she couldn't do what she does today without having had the MCS done. I know she really likes how it has changed her life and she likes her dr.

I had a peripheral neuro-stimulator implanted. It's a lot less invassive surgery. You can go to:
http://facial-neuralgia.org/treatments/surgical/neurostimulatorexperience.html and read my story about them. I don't know what I would do without them. If this hadn't worked to help with the pain, we were talking about doing the MCS. I've had this for 2 years now. I have one on each side of my face. Please let me know if you have any questions after you read the story.

Best of luck,

Kim

[MarleneW]

Kim,
Thanks for your reply.
I read your story and I'm so happy for you that something was found to help you.
I know what you mean by your family having to watch you go through this. I have three daughters. The oldest will be getting married in the spring, my middle daughter is a junior in college studying human relation/family studies,she wants to get her masters in chemical dependency counseling. Our youngest daughter is in 9th grade, we adopted her when she was in 3rd grade, just before all this happened to me. She had very bad learning disabilites and emotional problems. I have homeschooled my children and I decided to homeschool her also. Turns out it was the best thing for her, on her last pssa's she was proficient in reading, we still have a little way to go in
math. Sometimes I feel like my kids and husband are being cheated because of me not being well. All of the medications, treatments, and surgeries I think I try for them more than for myself, to try to get better for them. I don't know what I would do without any of them.
I have tried many, many medications, physical therapy, acupuncture, hypnosis,nerve blocks, cervical nerve root blocks, 2 mvd's,an occipital nerve decompression in June, and a c1 and c2 laminectomy with a c2 ganglionectomy in September. I think this last surgery was the most painful surgery I have had. I started physical therapy yesterday to try to get my neck moving again. None of these surgeries have helped, and it seems that with each one I have more pain than ever.
I have been offered the Motor Cortex Stimulation, if after this therapy it is no better. I don't know what to do, I don't know if I'm afraid of possibly even more pain or if I'm afraid of more disappoinment or maybe both.
Every time I have sometime done to try to help I feel like I let my whole family down,when I doesn't work. I know it's not my fault, it's just the way I feel. I'm sure you know what I mean.
I'm also afraid ,if MCS didn't work, what would be left? Where would you turn after that.
Thanks for listening to my pity party. I've been doing a lot of praying, I'm sure I will get my answers.
If you have anything else to tell me that you think would help, I would appreciate hearing it.
Marlene

[KIMMERS]

Marlene,

Bridget has Trigeminal neuropathic pain also. She told me that if the stimulation I have would work for her, she would have tried it first because it is a lot less invasive. It wasn't available when she had her MCS done. I don't know what type of coverage they would be able to get for you with the stimulator and leads that I have, I get great coverage. If it wasn't an option and I was in pain like I was, I would definately do the MCS. Had the peripheral neuro-stimulator not worked for me, we were going to do the MCS. I'm thankful it has worked so great.

Do all the research you can on it and be positive that it's something you want. Make sure your dr. has done several of them and knows what he's doing if that's the route you decide to take. I know that Dr. Jamie Henderson has done many of them and is great!!!

Let me know if you have any questions.

Kim