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Living With Facial Pain

My experience with the PainShield --- from a Newbie Member


#21

This is SHANGO .
Thank you for your contribution ! My husband has had his first night of pain shield last night ! His drugs are no longer effective . I bought the painshield a few years ago and have tried it off and on ! Thinking now I gave up too soon so will continue for 4 weeks .
Please keep in touch if you have time ! I will post results of treatment progress if it’s helpful


#22

Hi swede p This is Shango . I would so appreciate an update!!! Hope you get this.


#23

Hi Shango:

I still have facial pain but not to the degree that I have felt the need to use the Pain Shield. I don’t know if my long term use of the Pain Shield is responsible for my relief, or other factors.

For example, I have always had an uneven bite due to the placement of my upper and lower molars at the very back of my jaw. This causes, in effect, a slight delay in the closing of one side of my jaw and a tendency for the jaw to slide slightly to one side. This, in turn, causes the muscles or cartilage (not sure) just under my cheekbones to to protrude unevenly when I feel them as I bite down.

I brought this to the attention of my dentist, and he made an insert that I wear at night or when I am not talking. It is very thin, but strong, and sort of “snaps” onto my upper teeth. The right side at the back he made thicker, so it compensates for the uneven bite.

You might ask your hubby (a) if his facial pain is present just under the cheekbone, and if he has any tendency for one side of his jaw to be “later” to close. This may be something unique to me, but I have always been suspicious that a lot of so-called TN is really emanating from the jaw hinge, and not way back in the brain as they seem to claim.

Since this area is the same place where I applied the Pain Shield, I do not know which has provided me with the current relief that I enjoy. All I can tell you is that my pain used to be completely disabling for speech, eating, and sometimes even so frequent that I could not sleep.

Right now (knock wood), I would say that my pain is at a 1 or 2 on a scale of 10, and I just have it a couple of times a day for brief periods…

Best regards,

SwedeP


#24

How lovely you replied ! Thanks a million ! He does not feel bite is involved .worth considering tho . Drugs not doing anything now and pain is 10 ! Neurosurgeon in 10 days to discuss options! Meanwhile will continue with pain shield which could possibly be aggravating the situation but I don’t know ! This time I will continue for recommended time. ! When I did it last time the drugs helped so stopped pain shield. ! Maybe that was not sensible! Watch this space. Blessings ! Shango


#25

Hi Shango:

The Pain Shield should not be aggravating the pain. Since the transducer is in contact with an area that is painful, there is some expectation that just the touch of the transducer could add to the pain. But ultrasound is widely used to relieve soft-tissue pain. So, it may simply take a while to get relief. Another possibility is that the ultrasound is not propagating to the site from which the pain is emanating. Theoretically, by being located against the cheek bone, the sound waves propagate further than if placed on soft cheek tissue. In my particular case, the pain was felt all the way from the cheekbone near the jaw hinge to the tip of my lower jaw (and some teeth in between) but it was the placement of the transducer at the jaw hinge area that worked for me. Perhaps the nerve compression was sufficiently close to that area that the Pain Shield worked for me. That is consistent with the mouth guard realignment, perhaps, being able to reduce the compression enough that I could retire the Pain Shield.

Good luck with the neurosurgeon consult. Hopefully they have access to the highest resolution MRI machines and can see if the intracranial vascular compression that does require the full blown surgery is present. In my case, though the university health center has the highest resolution MRI in the US, they could not guarantee that I had that underlying vascular anomaly. This is a very nasty condition, with nothing but hard choices, and I wish the best to you both.

Best regards,

SwedeP


#26

Wow !thank you for that . Last night I contacted Amir Rippel re the increased pain and he replied so quickly !!

For some patients, PainShield usage may change pain pattern or increase it initially. This change may indicate that the ultrasound affects the nerve, which is good.
If the pain increases, we suggest shortening the therapy session length to only a session of half an hour for a couple of days and then increase to 1.5 hours per session only if therapy does not trigger increase in pain. Continue to 2.5 and on as pain levels allow etc.

Let me know if you need any additional information.,

shango again … will keep you informed if you like
off tegretol and baclofen from today days of usefulness have gone having trial on norotriptylene 10 mg increasing to 20 [early days ]


#27

I just came across the ad myself about 3 weeks ago. it doesn’t last forever the pain Shield? after you’ve used it multiple times you have to throw it away?


#28

Hi PamelaS

The Pain Shield has two parts, the controller and the transducers (that you tape to your face and create the ultrasound vibrations). These transducers do not last forever, and periodically need to be replaced. An icon appears on the screen of the controller to tell you that the transducer you are trying to use may have worn out. I think I have gone through 3 or 4 transducers in the last 5 or so years, because I got sufficient relief within 10 days or so each tme.

The treatment effect of the Pain shield, however, for me at least is very durable. You may find that you need to use it only seaonsally. (For some reason TN for many people comes and goes seasonally.) Since I added a bite guard that I wear at night to keep my jaws aligned, I have not used the Pain shield at all. (I would say it is getting close to a year now.) As I noted in an earlier post to Shango, proper placement is everything, in my experience. I placed it just under and against my right cheek bone (kind of where the jaw hinge is located).

My pain is NOT completely gone, but is just noticeable a few times a day (late at night, usually) and is at level 1 or 2 out of 10.

Best regards, SwedeP


#29

Where did you get yours?


#30

Hi Pamela 5:

I ordered it directly from the US distributor. At the time, they were located in New York or Massachusetts. Googling the web should bring up a source for you if you are in another country. Be sure when you order to get the transducers that are sized for facial application. The device can be used for nerve pain elsewhere such as carpal tunnel syndrome in your wrists. That involves a transducer with a larger “skirt” on it to facilitate attachment to a larger location. These large transducers will not reliably stay put on your face. As I have mentioned in other posts, although the transducers have reusable gel adhesive on them, I found that the paper-like medical tapes are useful in keeping the skirt of the devices in place.

I have never seen the device on Amazon or other such retail sites. I think you have to deal directly. My purchases at the time (the original unit plus another order of transducers) did not require a prescription, but I do not know what the situation is today. An Rx is a bit silly since the device has much lower frequencies and power output than ones that you can buy easily on Amazon and would thus seem inherently safer for application on the face. The controller unit automatically alternately turns the unit on and off every half hour or so during the treatment session. I would personally not use the other handheld units on the market for that reason alone. supposedly, the Pain Shield has been purpose built to be wearable and have the proper amount of frequency and power. Best regards,

SwedeP


#31

So I have read your helpful post and and got alarmed because of the mention of transducer wearing out. I have a pack of 6 and checked for expiry date and they are well past .i have not had a notification on the machine t o say it’s not working but my machine is prior to the new blue ones available now and may not have a warning built in . I have sent email to Israel to enquire hpvever the person is away till 28 August , Is your machine an older. Model in as machine a new one ? Shango !!


#32

Hi Shango:

My machine is at least as old as yours, I am sure. The icon for transducer damage or wear only appears, as I understand it, if the transducer has problems. The transducers should feel a little warm against your face as you use them if they are functioning. (Ultrasound warms soft tissue.) But that may not be a definitive test if you think your unit does not have the on-screen warning. I suspect that they function well beyond the accumulated hours of usage mentioned in the Pain Shield literature.

SwedeP


#33

Hi there ! So grateful for your help and support ! Your idea re the warmth is so sensible and I tested it. It was warm furthermore Amir (pain shield provider)who filled me with joy as he said the best before date relates to the adhesive part of the device and to use tape if it loses its adhesive qualities ! I still have several unopened patches so that is good
Neurosurgeon in 4 days ! It will be a long drive but grateful to finally get an appointment
Also seeing a senior osteopath experienced in cranial area ! Long shot but she has a great reputation and happy to do an assessment!
Next week is neurologist locally so he will look at medications etc ! This means the pain shield will have had 3 weeks to do its thing . That’s a fair enough trial I feel.
Will let you know how we go.
Thanks swede p. Shango


#34

3 weeks of pain shield.
Still patiently awaiting improvement!


#35

Week 5 pain shield. No improvement!


#36

Hi Shango:

That should be more than enough time if the device has been used nightly (running through its full 6 hours of off and on activity). I am just a fellow sufferer, not an expert, but it seems to me that there are 4 possibilities:

The placement of the Painshield transducer is not right. The Painshield needs to be near the source of the pain, which can be different from an area to which the pain is being referred. For example, in my case, my pain was the worst toward the back of my jaw (an bottom town of teeth) and even my chin was sensitive to touch and made shaving and brushing my teeth very painful. But the source of pain, I felt, was more likely near my jaw hinge under my cheek bone––even though I had only mild loal pain there. Also, the PS did nothing when I had used it in the other places.
The PS is not making proper contact with the skin and bone. I used stretchy medical tape to hold it in place overnight while the PS went through its cycles. Air spaces and gel degrade the transmission of the low-power ultrasound to your tissue, so the nature of the attachment is important.
You do not have TN. TMJ, dental nerve problems, or something else is mimicking TN. This is less likely if medications have worked for you, but even then, pain is transmitted through neural sodium channels and broad spectrum anticonvulsants can, for a while, relieve pain originating almost anywhere by blocking these channels.
Worst case is that you have the vascular anomaly that is thought to be the true cause of TN (a pulsing blood vessel constantly pounding on an adjacent part of the trigeminal nerve). This causes wearing of the nerve’s myelin coating. The PS could help this, but not if it is going on at a distance too great from the ultrasound to reach and help repair. Or, the nerve is not getting enough time to to recover between compression injury—such as being aggravated by use of your jaw. In my particular case, as I mentioned, the PS definitely worked for me once I got it placed properly (60 percent relief) and even better (90 percent relief) when I got a nighttime bite plate to give the jaw hinge area some rest (caused by chewing, perhaps grinding my teeth a bit at night, etc.

If you do decide to go the surgical route, especially the microvascular decompression (MVD) surgery, you have to make your own risk assessment. I was offered that opportunity at an excellent facility here in the Pacific Northwest. What confused me the most was that after 1 year, one-quarter of the patients had the problem recur. Why would it get better and then worse again if the “mechanical” problem of the blood vessels was the cause? Also, 12 percent or so had adverse side effects (hearing loss, loss of sensation in various places, etc.). Those are not terrible odds, but the PS was working for me so I stayed that course. What did your neuro think?

SwedeP


#37

So happy you have a solution for TGN. Enjoy!


#38

Well thank you for the help you offer !
Tried shifting Pain shield after 5 weeks. No difference sadly !
Have to say sadly the pain shield made no difference and I tried hard for 6 weeks . You were correct regarding the vascular anomoly .an MRI clearly showed the nerve and the vein are sort of tangled . Checked our gamma knife but he has chosen surgery which will take place late October.
Surgeon said 10 years ago he would not consider surgery at it at his age( 75 )but technology has advanced so much in 10 years that he is comfortable to perform surgery now
He tried noritriptiline which did nothing. Life has been tough .
Yesterday he had another shot at treganol as he had been off it for a couple of months as it had stopped working.Today he has no pain and we are so relieved so that suggests he is in remission. Don’t really know if it’s the drug or simply a remission
Maybe folk may feel it worth starting it again after a break to see if it helps Every day pain free is a blessing and and day closer to the surgery for my husband.
It seems sensible that I report on the surgery when it happens so I will do this
Is Anyone reading this happy to pray for my husband ? I thank you very much !
SHango


#39

M v d performed on Thursday last week ! Excellent recovery but still has some facial pain
Surgeon suggests it may take 4 /6 weeks to subside ! Does anyone have wisdom to share on this issue? Thanks ! shango


#40

I found the PainShield in early Nov. Purchased one right away. Followed the directions and had NO relief in 4 weeks. After finding this page and someone, who had success with the PainShield, I realized that I did not properly place the device. My damaged nerve is right next to my nose (I had surgery for a deviated septum with a bone spur to alleviate the cause, of course the nerve had already been damaged).

Any way, I talked to the sales person and got another 4 weeks to decide if I was going to keep the device (It’s expensive). After 4 additional weeks of placing the device directly over the damaged nerve and using LOTS of medical tape to keep the thing in place, as the edges are draped over my nose, I have had 50 percent reduction in pain.

I was wondering how long does additional healing take place and when does one know that’s the maximum healing one will receive?