Hi,
I spoke with a researcher/neurosurgeon about my neuropathic pain (via a dental injury) (and it presents itself like atypical tn) and his plan a would be his implanting an electrode high up in my spine on the same side as the pain. There is a 50-50 shot of relief but the risks -- infection or paralysis -- however small are too great for me right now.
Has anyone done external stimulation? He did say that with the machine that costs 1/2 a million the results are the same.
Thanks,
JanetM
I have an internal nerve stimulator placed…the battery sits by the collar bone and there is a main wire that runs up the neck and coils behind the ear where 3 separate wires are over the eye, under the eye and mid cheek…everything is under the skin and can’t be seen except the bump and scar where the battery is. I tell you, this has been a God send…I can count the number of times I have had eye pain since implant in November…the wires aren’t so great for v2 but, I am on an awesome med regime too…I would do it again in a heartbeat…I got the 50% pain relief they said I would get…I got the procedure done at Cleveland clinic in Ohio!! Hope this info helps you!!
So where is your pain, Lisa?
Also, the dr. was saying that 50% get complete relief or no relief and that was better odds than the meds.
Why did you decide to do it?
How long have you had it in?
What were you told the risks were?
Thanks,
JanetM
The endodondist hit my nerve with the needle when he did the mandibular block. Lidocaine was used. Overuse of lidocaine can cause nerve damage as well.
Cleo said:
sounds barbaric to me. what was used in your root canal?
I had the nerve stimulator placed in November of last year. I have had type 2 pain for 4 years…my pain is v1 and v2…the risks of the surgery were infection which of course goes along with any foreign object placed in the body, and migration of the leads which may require removal of the unit. I still have v2 pain because the Neurosurgeon wasn’t able to thread the wires across my upper lip because the tissue there was so thin he was afraid the wire would wear through…He told me I can expect a 50% decrease in my pain level…and I do feel I have that…My eye pain is 99.9% controlled just by the stimulator, and v2 isn’t covered at all…The eye pain was the absolute worst for me. With the pain I was unable to concentrate or focus on anything. It is tough to forget about your eye ya know. I decided to have the stimulator placed because I had already had an unsuccessful MVD and 6 different types of nerve blocks…all not a success…There was a trial before permanent placement. A one week trial, the wires were placed in my face but, the battery was external…(all done under anesthesia)…Apparently this type of stimulator is used for spinal pain and recently is being used for facial pain also. It is vital that u get the right Neurosurgeon who has the experience to go behind his knowledge. I feel very blessed to have found the right one!! I will have to have the battery replaced in about 5 years…its ok though, I don’t even mind…as far as still being on the meds…I honestly don’t mind that either…I am off all narcotics for the first time and that alone is a miracle!!
how does this work? do you press a button when you have pain or what?
Lisa26 said:
I have an internal nerve stimulator placed..the battery sits by the collar bone and there is a main wire that runs up the neck and coils behind the ear where 3 separate wires are over the eye, under the eye and mid cheek..everything is under the skin and can't be seen except the bump and scar where the battery is. I tell you, this has been a God send..I can count the number of times I have had eye pain since implant in November..the wires aren't so great for v2 but, I am on an awesome med regime too..I would do it again in a heartbeat..I got the 50% pain relief they said I would get..I got the procedure done at Cleveland clinic in Ohio!! Hope this info helps you!!
Yes I do have a hand held controller that I can use to turn on/off the stimulator…I have several different programs to cover different areas of my face…I have one program that covers most of the left side of my face. I usually turn that on low and leave it on all the time unless the pain becomes focused on a specific area. Unfortunately the stimulator wires do not cover my teeth…because the tissue above my lip was too thin to run the wires. So I am on a great med regime to go along with the stimulator…I have to say I am nearly PAINFREE!!!
Hi, I do not have any stimulator implanted on me, but I feel that 50-50 shot of relief is too low for me to take such great risk.
Hello Lisa
I’m just wondering if you can tell me why to except
I getting the trial one put in at themed of june and it had to stay in for 3 weeks
I’m just nerves not knowing what to expect like the day of the surgery? How long does it take ?
Do you feel any pain? And information to can give me will put my mind at ease a bit ? Does it work right away??
Thank u
Andrea
Lisa26 said:
I had the nerve stimulator placed in November of last year. I have had type 2 pain for 4 years…my pain is v1 and v2…the risks of the surgery were infection which of course goes along with any foreign object placed in the body, and migration of the leads which may require removal of the unit. I still have v2 pain because the Neurosurgeon wasn’t able to thread the wires across my upper lip because the tissue there was so thin he was afraid the wire would wear through…He told me I can expect a 50% decrease in my pain level…and I do feel I have that…My eye pain is 99.9% controlled just by the stimulator, and v2 isn’t covered at all…The eye pain was the absolute worst for me. With the pain I was unable to concentrate or focus on anything. It is tough to forget about your eye ya know. I decided to have the stimulator placed because I had already had an unsuccessful MVD and 6 different types of nerve blocks…all not a success…There was a trial before permanent placement. A one week trial, the wires were placed in my face but, the battery was external…(all done under anesthesia)…Apparently this type of stimulator is used for spinal pain and recently is being used for facial pain also. It is vital that u get the right Neurosurgeon who has the experience to go behind his knowledge. I feel very blessed to have found the right one!! I will have to have the battery replaced in about 5 years…its ok though, I don’t even mind…as far as still being on the meds…I honestly don’t mind that either…I am off all narcotics for the first time and that alone is a miracle!!
thanks for all the details but what does the stimulator do? Does it sent out a shock or what. what does it feel like? Is it automatic or do you habe to press a button? I've been using an electric toothbrush on my jaw on occasion. the vibration seems to help with the shocks of tn. I had my initial mvd in jan 98 and was pain free for 12 years. The pain returned in 2008. Had another mvd in 2010. It helped but only partially. Now I am looking into my options including another mvd or possibly a stimulator. I've got classic tn in the lower jaw. Thanks. Ben
I see. I am a bit freaked out about the surgery. About the risks. Who was your neurosurgeon? What happens about 5 years?
Lisa26 said:
I had the nerve stimulator placed in November of last year. I have had type 2 pain for 4 years..my pain is v1 and v2..the risks of the surgery were infection which of course goes along with any foreign object placed in the body, and migration of the leads which may require removal of the unit. I still have v2 pain because the Neurosurgeon wasn't able to thread the wires across my upper lip because the tissue there was so thin he was afraid the wire would wear through..He told me I can expect a 50% decrease in my pain level..and I do feel I have that..My eye pain is 99.9% controlled just by the stimulator, and v2 isn't covered at all..The eye pain was the absolute worst for me. With the pain I was unable to concentrate or focus on anything. It is tough to forget about your eye ya know. I decided to have the stimulator placed because I had already had an unsuccessful MVD and 6 different types of nerve blocks..all not a success..There was a trial before permanent placement. A one week trial, the wires were placed in my face but, the battery was external..(all done under anesthesia)..Apparently this type of stimulator is used for spinal pain and recently is being used for facial pain also. It is vital that u get the right Neurosurgeon who has the experience to go behind his knowledge. I feel very blessed to have found the right one!! I will have to have the battery replaced in about 5 years..its ok though, I don't even mind..as far as still being on the meds..I honestly don't mind that either..I am off all narcotics for the first time and that alone is a miracle!!
janet - a question - how could one confirm that that is the cause of the pain.
i mean - i was offered the theory the i was injerd during a dental injuction.. but this theory ' isn't "proven"
as there are no XRAYS that can show that. that is part of the problem. no obvious reason for the pain.
it's so severe. i've removed 2 teeth today. if it doesn't help (i guess it won't ) i'll start going on meds
janetm said:
The endodondist hit my nerve with the needle when he did the mandibular block. Lidocaine was used. Overuse of lidocaine can cause nerve damage as well.
Cleo said:sounds barbaric to me. what was used in your root canal?
lisa hi
as cleo said - this stimulator does sounds creepy.. and barbaric - that's the word.
but - it so good you found what saved you . i would have replaced with you in a second.
but it seems so frightening and exaustiong.. all this trail and error.. and the MVD you went through...
and cleo with her needle removing