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Living With Facial Pain

Motor cortex stimulator

#1

I have had TN for 3 years and now have been told I have MS. The TN has gotten some better after having the cyber knife but still is not bearable. I have been told by my doctors this procedure is all they can do for me. Has anyone else has this and if so would you share your experience?

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#2

Is it motor cortex or Peripheral nerve stimulator? Motor cortex is actually in the brain, while peripheral nerve stimulation involves leads placed under the skin, along the path of the nerve. I have the PNS, and would be happy to answer any questions.
Christine

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#3

gChristine, I would love to hear more about the PNS:

How invasive was the procedure? What exactly do they do, and how long before you started feeling any results? And which type TN do you have, and how many branches are affected in you? I have a 6-brancnTN, is there any chance, r do you need to have just one affected branch. Etc etc! Thanks.

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#4

I just saw this, Ginger. I have applied to be part of a clinical trial at Johns Hopkins for motor cortex stimulation for intractable TN. I have an appointment to meet with the neurosurgeon on September 21, to see if they'll include me in the trial. As my TN/GN is getting progressively more debilitating, I'm incredibly excited about the prospect of having the surgery.

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#5

I have bilateral ATN, with both the burning boring pain and shocks, all three branches are affected on both the right and left side. I had MVD on my right side, and although it relieved the shocks, the burning boring pain was never resolved. This prompted my surgeon to suggest the PNS.
You would first have a trial, which involves the leads being placed just under your skin along the path of the nerve. The leads are connected to an external battery, and you will have a hand held remote control with which you can change the amount of stimulation. This is usually done under anesthesia but is outpatient.The representative form the manufacturer of the PNS met me in the recovery room to show me how to use the unit, and followed up with on the phone every day of the four day trial. I felt relief immediately, so I decided to go ahead with the permanent implant. The battery for the unit is placed under the skin in my chest, just below my collarbone. The leads run up my neck, with one in front of my ear that goes into my cheek, and the other runs behind my ear up into my scalp. Each of my leads has four contact points, so I can control the stimulation to cover all my areas of pain. This procedure was also outpatient. The recovery was not bad at all. The most uncomfortable area was at the battery site, as that is the largest incision. I did need to be careful to not strain any muscles in my neck or chest for a while, but did not have any other restrictions.
I did have successful MVD on the other side three months later, and was able to wean off my medication within two months. The PNS completely controls my right side pain , and I feel great.
I am sure you have more questions, so please feel free to ask!
Christine

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#6

Hi Beth,

I have also applied for the clinical trial at John Hopkins for the motor cortex stimulation. I willl be there as well on September 21. Hope it is a good outcome for you!

Beth said:

I just saw this, Ginger. I have applied to be part of a clinical trial at Johns Hopkins for motor cortex stimulation for intractable TN. I have an appointment to meet with the neurosurgeon on September 21, to see if they'll include me in the trial. As my TN/GN is getting progressively more debilitating, I'm incredibly excited about the prospect of having the surgery.

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#7

Hi Jesse,

Oh, we should get together for coffee or a drink after our appointments. Mine is at 10 am.

Will you be in Baltimore for long? I'm going to fly in the day before and leave on the evening of the 21st. I'm quite nervous about getting into the study; I want so badly to get some relief.

Beth

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#8

I have to confirm my appt time still. Depedning on the time, we aren't sure if we are going to go the night before or just drive down in the morning. It is about a 2.5 hr drive for us. I will let you know when we solidify our plans so we can hopefully coordinate a get together. We are trying to decide if we are going to bring our older daughter, who is 3.5, with us to go to the aquarium. I just don't know how long the appt will be and if she will last that long waiting.

I am praying that something good will come out of it. I desperately want a solution and pain relief since every option as been exhausted.

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#9

No it’s not all they can do for you. I get Botox for face, neck, upper cervical pain and migraines. Trigeminal nerve blocks, occipital nerve radio frequency, radio frequency in my neck, shoulders and back. Full Chinese massages which include the head neck and face. I take vitamins, Xanax for the jaw muscle and burning, ambien and Percocet for all pain because there’s even a neuralgia for the foot called mortons neuralgia. I don’t feel great by all this but I can function with controlled pain. I have TN, ATN, GN, Mortons and everything that goes along with them. Horrible way to live.

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#10

Reading all of this is making me very nervous. I hate being effected with this sh**. I know it’s my MS that has caused the problem. I just spoke with my husband, and told him I wish I had the opportunity to ring the neck of a relative who may have had this. I am sick of being sick! And I know you all are as well. I get zero sympathy from my family, because they just don’t understand. I have 2 boys, 19, and 20, both in college and 1 going to Seton Hall for nursing. Lol and the other is going for chiropractor. They make light of my problem all the time. I have a 10 year old girl too, and by God, it’s so unfair for her! I often wish I was in the box. Our lives with TN simply sucks!

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#11

Maryann, we are all different, some things work for some but not for others. I'm sorry your family isn't sympathetic to your pain. I would certainly get your hubbie and boys to read some of the info on this site so that they can get a better understanding of the problem. Don't forget we are all here for you. Sending healing thoughts. Mary

Maryann Mohan-Raftery said:

Reading all of this is making me very nervous. I hate being effected with this sh**. I know it's my MS that has caused the problem. I just spoke with my husband, and told him I wish I had the opportunity to ring the neck of a relative who may have had this. I am sick of being sick! And I know you all are as well. I get zero sympathy from my family, because they just don't understand. I have 2 boys, 19, and 20, both in college and 1 going to Seton Hall for nursing. Lol and the other is going for chiropractor. They make light of my problem all the time. I have a 10 year old girl too, and by God, it's so unfair for her! I often wish I was in the box. Our lives with TN simply sucks!
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#12

Maryann, I am sorry to hear about your family but mine too have a hard time understanding the disease. I think it is a great idea to have them read some of the other post. Also known I am willing to talk to you on the phone if you would like.

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#13

Thank you so much to everyone who replied to my post. I am 2 weeks post surgery and so far I think it is really working. I appreciate all the support I get from y’all.

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#14

Ginger thank you for the update! I am so glad you think it is working!!

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#15

Maryann,

It seems nobody can understand pain that doesnt show. Your kids cannot understand, they are not able to. However, look at the positive in your life. You are not alone, you have your Husband, kids in medical college and are trying to understand why you complain. They maybe secretly attending medical college to help you one day with the newest and latest technology. Your 10 year old cannot relate but is more than likely scared.

I have chosen not to discuss this with my Husband and kids because I demand a happy home, dammit! lol. Scientist and specialists dont understand why this is happening to us so how can I possible expect family to? I cant, you cant.

Vent here and to a shrink and just try and bring happy things, little gifts and happy thoughts into the household. Brightness. I use Amazon every week and get little things for my family. I painted my fridge with black chalk paint and drew a huge yellow sun on it.Its so silly it makes me smile. It hurts to smile but its joyful and your 10 year old would love to do that with you.

What exactly are you expecting from your kids when you dont lead them but expect them to lead you? I think you are setting yourself up for heartbreak and creating negativety. Pick and choose your battles. You dont have the energy to worry or fill yourself with pitty and guilt. Reroute the little energy you have and make it positive and if you dont feel well. go to sleep. No need to discuss, take your meds and let your body and mind rest. Also, massages, nail and toes. Go for little walks, even with your kids. Just try to re-route your energy...complaining takes a lot of work...going for a 10 min walk by yourself or with a child, dog creates such positive energy and the time and love they need from you. Then go to sleep. lol.

We can do anything for a minute!! Let the minutes pile up by thinking just one more minute.

Help yourself and keep medical between you and your doctors....vent to them, yell at them, send them your stress..thats their job! Its not yours nor your families job, let it go and leave it with the professionals.



Maryann Mohan-Raftery said:

Reading all of this is making me very nervous. I hate being effected with this sh**. I know it's my MS that has caused the problem. I just spoke with my husband, and told him I wish I had the opportunity to ring the neck of a relative who may have had this. I am sick of being sick! And I know you all are as well. I get zero sympathy from my family, because they just don't understand. I have 2 boys, 19, and 20, both in college and 1 going to Seton Hall for nursing. Lol and the other is going for chiropractor. They make light of my problem all the time. I have a 10 year old girl too, and by God, it's so unfair for her! I often wish I was in the box. Our lives with TN simply sucks!
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#16



Beth said:

I just saw this, Ginger. I have applied to be part of a clinical trial at Johns Hopkins for motor cortex stimulation for intractable TN. I have an appointment to meet with the neurosurgeon on September 21, to see if they'll include me in the trial. As my TN/GN is getting progressively more debilitating, I'm incredibly excited about the prospect of having the surgery.

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#17

After having the procedure on 8/13/15, I have not had the success I was wanting. I keep going back almost weekly to have the unit adjusted and try to get some relief. I am VERY sick of being sick!!!! I am VERY sick of doctors!!!!!! I am VERY sick of meds!!!!! But I do have faith in God and know He has a plan, I just wish I knew what it was and why. I do not regret having the procedure but I sure did not know what all came with it afterwards. I have to charge my battery every night and it takes almost two hours. Life has gotten so out of control!!!!!!!!!

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#18

HI Ginger,
I am sorry you have not been getting the relief you sought! It must be so discouraging. I am curious about you having to charge your battery so often, and for so long. What type of unit do you have? I have a St. Judes, and only charge once a week for about an hour. I have my stim on 24/7.
I hope reprogramming will help you!
Best
Christine



Ginger said:

After having the procedure on 8/13/15, I have not had the success I was wanting. I keep going back almost weekly to have the unit adjusted and try to get some relief. I am VERY sick of being sick!!! I am VERY sick of doctors!!! I am VERY sick of meds!!! But I do have faith in God and know He has a plan, I just wish I knew what it was and why. I do not regret having the procedure but I sure did not know what all came with it afterwards. I have to charge my battery every night and it takes almost two hours. Life has gotten so out of control!!!

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#19

What is a saint Jude's? Where is your stimulator located? Are you on any medication?I also have MS and have to take medicine for that disease. I was healthy until all this hit at once. I am feeling very overwhelmed by all this but I know God is still in control. I really wish I could have my life back!!!!!

Christine said:

HI Ginger,
I am sorry you have not been getting the relief you sought! It must be so discouraging. I am curious about you having to charge your battery so often, and for so long. What type of unit do you have? I have a St. Judes, and only charge once a week for about an hour. I have my stim on 24/7.
I hope reprogramming will help you!
Best
Christine

Ginger said:

After having the procedure on 8/13/15, I have not had the success I was wanting. I keep going back almost weekly to have the unit adjusted and try to get some relief. I am VERY sick of being sick!!!! I am VERY sick of doctors!!!!!! I am VERY sick of meds!!!!! But I do have faith in God and know He has a plan, I just wish I knew what it was and why. I do not regret having the procedure but I sure did not know what all came with it afterwards. I have to charge my battery every night and it takes almost two hours. Life has gotten so out of control!!!!!!!!!

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#20

St Jude’s is the manufacturer of my stimulator. My battery is in my chest, just below my collar bone, and I have two leads. One goes behind my ear into my scalp and temple, the other is in front of my ear, into my cheek. I do not have MS, and am not taking an medication.
I will keep you in my prayers !
Christine



Ginger said:

What is a saint Jude’s? Where is your stimulator located? Are you on any medication?I also have MS and have to take medicine for that disease. I was healthy until all this hit at once. I am feeling very overwhelmed by all this but I know God is still in control. I really wish I could have my life back!!!

Christine said:

HI Ginger,
I am sorry you have not been getting the relief you sought! It must be so discouraging. I am curious about you having to charge your battery so often, and for so long. What type of unit do you have? I have a St. Judes, and only charge once a week for about an hour. I have my stim on 24/7.
I hope reprogramming will help you!
Best
Christine

Ginger said:

After having the procedure on 8/13/15, I have not had the success I was wanting. I keep going back almost weekly to have the unit adjusted and try to get some relief. I am VERY sick of being sick!!! I am VERY sick of doctors!!! I am VERY sick of meds!!! But I do have faith in God and know He has a plan, I just wish I knew what it was and why. I do not regret having the procedure but I sure did not know what all came with it afterwards. I have to charge my battery every night and it takes almost two hours. Life has gotten so out of control!!!

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