So we’ve had the third Physio appointment, the assessment is that C1 & C2 have freed up considerably and are nearly normal & the mid thoracic is much better, but T4 & T5 still need some work, particularly T4.
Last night she was doing a folding stretch, something shifted in right shoulder and her shoulder tension felt even better, so it seems to be a bit of a progressive release as muscles relax and re position along the spine.
The pain level is just a fraction of where it’s been, more like a tug along the same pathway, but minimal/if any pain, she’s eating & speaking freely and sleeping right through the night.
Just linking a couple of my previous threads for background so I don’t need to rewrite our story: http://forum.livingwithfacialpain.org/t/another-newbie/13242
So the Physio did a bit more work on the problem areas, gently massaging the individual vertebra to free them up, we discussed the exercises and did some fine tuning on them.
Tomorrow I will try to copy and upload the exercises that we’ve been doing just to share the info.
My 2 cents…my pain started after a dental appointment and after years of being diagnosed with TN I realized my pain spiked by my neck movement and it still continues. Eventually my diagnosis was changed to Eagle Syndrome and with a surgery under my belt and continued therapy and restriction on certain head movements I have been able to control my pain. I have found the small muscles in my head, neck and shoulders are the key to stopping the pain. I also use a specially made bite plate fo relax my muscles and get more Benicia from muscle relaxants then from the typical TN medications. In any case I think all facial pain sufferers should look at muscle tightness, posture and movement.
I too get some relief with muscle relaxants thrown in the mix.Doctors don’t want to prescribe them so I take over the counter.If I do not add them to the mix of meds the mouth pain is not controlled as well
There is plausibility in patient reports that changes of posture seem to be helpful in some cases of facial pain. Anything that stretches the upper spine would seem to have potential to separate the trigeminal nerve from compression by nearby blood vessels or other structures near the brain stem.
That being said, the overall discussion here on the site suggests that chronic neuropathic facial pain may have multiple causes, of which microvascular compression is only one. So there is no “one size fits all” solution. Chiropractic and PT are certainly not a panacea, though they seem to help some people temporarily, for part of the time.
From 20+ years of talking with patients as a non-physician myself, I admit to continuing skepticism over generalized “cervicogenic” claims. But I also recognize that quite a high proportion of cases seem to present first after a whiplash injury in automobile accidents or physical trauma from a fall. It seems to me that each case must be addressed individually, in spirit of trying alternative therapies until something is found that seems to help, even if temporarily. And each patient may need to prepare themselves mentally and emotionally for the reality that neuropathic pain EVOLVES over time and can recur for no obvious reason in months or years, after an effective treatment has been found. Medications stop working. Other therapies may also.
“That being said, the overall discussion here on the site suggests that chronic neuropathic facial pain may have multiple causes”, no may about it, facial pain has a multiple of causes.
Listening to surgeons, who admit a postural element in some 40% of cases, and then go on to suggest tightening of blood vessels, in order to sell MVD, is rubbish (personnel opinion), when the trigeminal nucleus extends into the cervical spine. I’m told there is no proof Micro vascular compression causes TN, and I haven’t found any either.
Who says " Chiropractic and PT are certainly not a panacea, though they seem to help some people temporarily, for part of the time.", You dismiss, it’s a patch, or are you actually saying it helps take the stress off the vascular compression? Why do you think PT can provide relief as reported?
PT, chiro, osteo, alexander, eat more marsh mallows will only be of help LONG term if the physical cause, posture stress etc, is identified and acted on, if indeed it’s the original cause.
Anything over drugs, cranial surgery has got to be a plus. TN, EVOLVES if you don’t address the initial cause. Negativity is painful, unhelpful, as is stubbornness. I won’t be adding more in reply.
Thanks for the replies,
Sorry my scanner is on the blink so can’t scan exercise sheet, should get it sorted this week.
I understand fully with these poorly defined conditions that seem to have a will of their own, so what seems to work for one person, doesn’t work for another and not being a controlled trial one can never be sure whether the therapy failed or whether it was incorrect application.
We made an independent call that posture was somehow linked with the cause and it was because of this hypothesis that we were searching for the right practitioner to work with. We tried Acupuncture, Massage, Chiro, Drugs, Osteo none of which were very effective, then we tried the Physiotherapy which has been the most effective by far. In having said this I do not think every Physio is the same and had we seen another maybe outcome may not have been as significant. I think it’s important to share all the little details of peoples therapies that work because the cause of tn is still unknown and by sharing and comparing the minute seemingly insignificant details, we may be able to narrow in on that elusive cause.
After making such good progress, my dearest was having “studio withdrawals” and spent 4 days hunched over artworks on her desk & easel, woe & behold the facial tweaks.decided to remind here she wasn’t out of the woods yet, not too painful, but certainly a step backwards, so re focus on posture for 2 days and we’re back on track again.
We’ve certainly had a few hiccups, but the improvement trend has been positive overall, with a number of distinct steps over about 8-10 weeks
Firstly there was the focus on standing posture, straight spine, slightly bent knees, head straight, chin tucked in, feels a bit like you are suspended from top of head and your body is hanging free.
Walking whilst remaining aware of posture, keep chin tucked in, face & eyes looking toward the horizon, like a monarch survey your domain.
Sleep on floor with just thin mattress 2-3 inches (50-75mm), mostly flat on back with minimal or no pillow under head & a medium pillow under knees so they are slightly bent, this basically mimic’s the standing posture.
Beginning to address face forward & rounded shoulders issues with a variety of exercises we found online.
These steps had helped us come back from the worst of the experience (screaming pain) back to the regular face shocks if you weren’t careful with how you handled your face, brushing teeth etc.
Physiotherapy came after this, so we had already made quite significant improvements already & I suspect her body was now well primed to receive more detailed therapy from the Physio.
Although we still do not have an absolute final hypothesis, every step of the way seems to keep re-affirming the some connection to posture, most likely upper cervical, but also possibly other areas, like mid thoracic in our case. It seems as soon as she develops some tension in her mid shoulder area the tn begins to whisper warnings.
I really appreciate the updates.I started sitting on a yoga ball while at the computer.They have chairs that have built in yoga balls.Maybe that would be something you would be interested in trying,too.
I think all the little details that we as patients have need to be put into a giant computer and the results given back to us.
Thank you,again
Sorry for my absence,
All was going great, then I had to go for away on a work trip for two weeks, two weeks before leaving my partners Tn started to ramp up, got worse while I was away, then peaked just after my return.
Her sister stayed over while I was away to help out, this was great but did not stop the Tn.
First thing I noticed was her stance, her posture had reverted, so we went back to basics again, gradually the Tn began to subside and she is good again, just light sensation above right eye, no shocks.
There seems to be a number of factors at play here
*Anxiety & Stress
*Posture
*Shoulder & Spinal tension
*Hot Flushes/Flashes - Early Menopause
When one gets worse, then the others follow and the Tn flares, likewise they seem to improve together and the Tn subsides.
She did make a new discovery from this recent lapse, the shoulder tension seemed to run away once it began to tighten and no amount of massage and manipulation could halt it, a while back she realised walking with hands on hips helped with this, then this time she tried the yoga posture below: http://yogabycandace.com/blog/2012/7/20/yoga-tip-reverse-prayer-hands.html
It gives almost immediate improvement in releasing her tight shoulder/spinal muscles and the flow on effects are all other symptoms improve.
Every step along the way seems to be pointing in the same direction that in our case there is a distinct postural connection, so we will continue along this path fine tuning as we go.
Same here , a very strong postural correlation! Please let keep us updated as to which poses/therapies help, I am going to start seeing a physio soon as well.
Still on the roller coaster, just over a week ago I asked how she was doing as she seemed to be coping really well, very cautiously she replied seems to be “better than ever”, well as they say “famous last words” as the down slide began.
I do need to note here there was some emotional stress at this time, then bad weather upset exercise regimen and to top it off a hit of the flu, these may well have tipped the apple cart. I also think there may be an underlying hormonal cycle that is setting up the conditions for an upset as it seems to recur in a 3-6 week period.
Every time we cycle through this the pattern changes a little, the pain profiles are much the same, but the way they respond to actions is slightly different. The various things that have worked to reduce the pain don’t have the same effect all the time, so to me this is an indicator that there is a number of links between the action & the TN cause, hence multiple different actions can help at different times depending on how the links are connected. Postural actions do give relief, but it is temporary and the pain gradually returns.
The biggest issue at the moment is the shoulder/neck tension which is unrelenting, I do massage her and this helps, but as soon as I stop the tension starts to build again, and the right forehead tingle ignites again.
I have started to look at the idea of ligament injury in neck allowing excess movement in vertebrae as being a possible cause as she did have a bad head butt to a low shelf, which left a good scar on her right brow, was 15 years ago, but it may well be part of the puzzle.
Have Physio appointment today, hopefully we will get some positive action on that shoulder tension.
Wishing you luck.I was rear ended a couple months before all this started.Apparently whiplash injuries can cause similar type pain in the lower branch.I just wish we could get a true diagnosis of the state of our bodies and work from there.As it is,we guess and our bodies have more parts than cars do(I think)
Thanks for the reply
It’s totally frustrating to be going so well and then, apparently without warning, be thrown backwards so far, kind of like the old game “Snakes and Ladders”. This is obviously the unknown factor/s which are triggering these changes, we must remember that the spontaneous remissions are also effected by these unknowns, which I believe to be related to Cervical Instability issues.
At this time in my mind the Postural/Neck hypothesis is still the best fit for the Trigeminal Neuralgia MO (Modus Operandi) for a large portion of the population group.
She has been able to pull back the pain intensity with a concerted effort to maintain posture and carefully control movement. I give her standing massages in a face to face position working from lower back to neck, shoulders to fingertips, this helps to reduce her shoulder/neck tesion which has a direct impact on the TN.
Improvement has been slow, but things are improving, so onwards and upwards.