Tn pain and life

Symptoms & Treatments
1

Every patient I have had with facial pain (one exception they didn’t want to share their MRI- couldn’t be bothered) Vascular compression included have benefited from physical therapy. One of the main parts of your trigeminal nerve pathway extends to your neck. Yet many folk visit their GP referred to neuro, then drugs,needle knife/ drill in the absence of any diagnosis/ cause.

Without pathology the main cause of TN is your lifestyle and it’s impact’ in the absence of pathology.

Got a boss you want to murder, your wife does your head in, any number of stresses, and you reckon, in the absence of a pathological diagnosis, drugs may be the answer or even surgery.

You want to take something out of the equation, not add to it. Get rid of the stress, which is something you have to recognize. It isn’t coming in a pill.

Crap, every modern disease is due to lifestyle, if your not born with it ," I’ve got vascular compression of the trigeminal nerve" have you heck, the evidence in correlation is where? there is none.

Realize drugs are a part of coping, but don’t stop there ask why? Stress, could be unresolved from years ago, poor posture, poor diet the list goes on. Adding a drug does NOT address the underlying problem.

2

Happy Mother’s Day
I just had an MRI that included everywhere the nerve goes to.
The guy was super good and he did a high resolution of one spot.So now it is like waiting for Christmas and seeing what it is that he saw.
Where I live the usual medical tests and doctors are covered under the health insurance plan but the others are not.So for me it makes sense to do all these tests first.
Plus -what if there is a problem somewhere else and the chiropractic makes it worse.Please don’t tell me that does not happen
Then there are more things for the medical doctors to look at.
Wishing you wellness and maybe a referral to a good chiropractor in Toronto area.

3

Hi |Ellen,

As a therapist, it is always good to know that, with facial pain, someone has a clear MRI. That said without it a good therapist should be able to ask the questions of the patient as to whether it is necessary for imaging prior to treatment. If tests are offered have them, PT’s aren’t all that.

I might add that in the UK at least looking at the entirety of the trigeminal pathway is not typical in imaging. My neighbour is a radiologist and admits he doesn’t consider- or I might add didn’t consider the entirety of the trigeminal nerve complex, concluding he probably should. I’m sure this is typical, and any one suffering facial pain should ask that all the Trigeminal pathway be looked at.

Your chiro/ pt/ neuro / surgeon could all make it worse, their trained to do otherwise. I’d like to think they are acting in your best interest and money isn’t a driving factor

4

As a warning …I tried physically therapy first before drugs…each therapy session made my pain unbearable…it took countless doctors until I found the source that triggered much of my pain called Eagle Syndrome. I had a a bone removed in my neck and now focuses on my diet, posture, not lifting heavy objects, jaw position, therapy and stress reduction to control my pain levels. Drugs are my last resort…I will never be cured of my pain but bone I can manage it. I believe we need to find the source of the pain and diet/ posture/ stress level are more important then drugs for me.

5

Just out of interest, can the whole pathway be seen with a standard MRI, or would a Fiesta MRI be needed? Is the Fiesta MRI available in the UK, do you know?

6

I believe it was a Fiesta MRI.Not 100% sure-but the doctor was thrilled when I asked whether the first basic one I had a year ago was a fiesta(it was)This is in Canada.
The doctor was not sure whether the technicians would understand what he wanted-and they did get it right.The technician told me not to move,to keep my eyes closed and not move them under the lids.So I believe it is the whole pathway.
I do have restrictions in my neck that have showed up on tests-but I have no pain in my neck.
I just hate to add one more thing to the bundle.
I do see a physio who listens to me,but sometimes she will try something new with my permission and it is worse for me.
So if anyone has any suggestions for a Chiro here in the great whiteish north,let me know.
Because if this last test showed nothing(but I think it did) that is my next step.

7

In Canada the medical doctors are covered through our taxes-along with imaging.
Nothing related to dental ,though,which makes it more complicated.
I am being seen at one of the largest hospitals in Canada-so the imaging (MRI) is covered.In Canada doctors don’t want you-they have enough patients already.
I just so hope that they have seen something.
Fingers crossed.
Thanks for your help-I really appreciate it.
Before this-no drugs-make my own herbal remedies.
Now -reading how to grow my own poppies.

8

I tried three different physical therapists using different modalities and each time it made me worse. It depends on what is causing your facial pain.

9

Interesting from the folk who state it, physical therapy made it worse. Not saying they were fiddling with your neck, but if they were and it made it worse, might it not suggest your neck was involved in the scenario? Squeeze a zit and it isn’t happy, but it was the source of your angst.

I’ve been pulled up on this before, but many physical therapies work on the fact they increase inflammation in the initial stage, inflammation=pain, and inflammation is your bodies way of healing, sure it hurts.

Not new, although the media portrays it as such at this end, the UK, is that anti inflammatory/ steroid injections actually make osteoarthritis outcomes worse in the long run by inhibiting healing.

Inflammation, must get rid of that, eh no, it’s a healing process, quit the anti inflammatories. Alternatively take them, you will feel better as the body rots.

If physical therapy to an area makes your symptoms worse you can expect that area to be involved it the problem.

Ann4, not sure where you are coming from but removal of a bone in your neck doesn’t seem to have helped a lot if but I’m glad you concentrate “on my diet, posture, not lifting heavy objects, jaw position, therapy and stress reduction
control my pain levels”

Eagles syndrome, styloid growth? ligament calcification? another one for the guy with a knife and a needle, and nothing else in his tool box.

10

I have had TN since 2010 almost 20 years I had neuralgia as a kid and all through my young adult life. You could be right about not taking medication but if I went off mine I would suffer with rotten pain. Excruciating it’s not nice. My doctor (GP) that I go to now suggested that I try to lower the dosage by not taking the morning tablet and only taking it at night. I lasted a week, it was not a good idea at all so once I had started the morning dosage I was pain free again after a few weeks, even my GP doesn’t feel that it is a good idea to that again. Even though I am on medication I still have to take pain killers. I still have the tooth ache where I have no teeth and the metallic taste when I have what I call an electric shock going through my gums. There are many like me and many more who are much worse.

11

Hi Susan
You sound like me in the dental pain and electric shock in the gum stuff.
What pain killer works for you?
I have stuff with codeine that takes it down a notch but am always interested in what works for others if the codeine looses it’s ability to fight the pain.
Thanks

12

My last reply sounded a bit brutal, of course pain management is important if you can’t function without it. It just isn’t a long term answer, just a patch, do everything you can to look into the root cause of your problem. If you’ve been told, it is due to vascular compression, possible?? unlikely, don’t stop looking just because your on meds and can possibly cope.

13

Hi Ellen the extra pain killers I will take is 2 - 6 Nurofen in a day I also take Lyrica for crazy legs and pins and needles in my feet, sometimes I couldn’t walk for the sharp rock pains under my feet. I find with the 300mg of Tegretol (carbamazepine) and 150mg of Lyrica per day I don’t have the crazy legs or the sharp rocks under my feet but I do still have the numbing feelings of pins and needles in my feet. As far as the TN it is there all the time behind the medication with the umbness on the left side of my face and head. I honestly do not know if there is any cure…
Hope this helps you.
Susan:sunglasses:

14

aiculsamoth -

I must respectfully disagree with you. I suffered with pain for three years before I got an actual diagnosis of TN. Tried acupuncture, chiropractic manipulation, massage therapy, biofeedback, guided imagery, and I don’t remember what else before I relented and agreed to have an MVD. During surgery they found an artery and 2 veins compressing the nerve. They decompressed it and VOILA! my pain was GONE! Unfortunately, it came back a little less than 9 years later. I had a repeat MVD and they found that the nerve was tethered down by scar tissue, they decompressed the nerve again and I woke up from anesthesia TN pain free. Lifestyle is NOT the cause of TN. In fact, they now believe there is a genetic component because they are finding so many patients (esp. younger females) that do not have any neurovascular compression. Several DNA studies are being done right now (one at Portland’s OHSU and sponsored by the Facial Pain Research Assn). Certainly lifestyle and stress contribute to pain, but alone it is NOT the cause of TN. Also wondering which part of the trigeminal nerve pathway goes to the neck? I have never seen this in any medical reference and would appreciate knowing your source. http://teachmeanatomy.info/head/cranial-nerves/trigeminal-nerve/

Wishing each of us a better day than the last.

2 Likes
15

Thanks Susan
I am working on my thyroid as a possible culprit in my pain now.I had been rear ended shortly before my first tooth got sore-but no one looked into it and I am a novice to this stuff.Now-2 years later my thyroid is hyper and I am getting numbness in my hands.I just have a hard time with knowing that my doctor sent me to a neurologist to look into carpal tunnel and the specialist saying no it was not and then NOTHING.
So now things are worse.

16

The trigeminal nerve begins at the brain stem and ends in the face, breaking into 3 branches- none of which extend to the neck. This is not to say you couldn’t get pain referred to the neck region, but this has nothing to do with the trigeminal nerve.

1 Like
17

Ugh, I’m having a problem with numbness in my hands also. I wake up at night and part of my hand has fallen asleep. Doctor told me this is Ulnar nerve impingement, and to just be careful what position I sleep in. But sometimes it is other parts of the hand.

Basically I think my nerves are going haywire. :worried:

18

Hi Ziggy
Sorry you are getting the hand numbness.If it is ulnar nerve impingement-can you have an MRI of your upper spine to make sure?
If you have not had a full workup of your thyroid can you ask for one?I had the TSH done and it was fine for 2 years then suddenly when low.
One of the symptoms of hyperthyroid is burning mouth.
I wish I knew more and pushed for more tests on my thyroid earlier.
No proof yet,but it is looking that way for me.

And Liz- from what I have read there is a part of the nerve that extends into the neck slightly-unless you are an anatomist and can prove me wrong.I just don’t want someone to discount upper cervical treatment if they think it might help.If the thyroid thing did not show up ,that was going to be my next move.

19

I’ve taken several anatomy courses.
Maybe you are thinking of the facial nerve?

1 Like
20

Hey guys I don’t know but my neurosurgeon out of mgh Boston told me nooooo chiropractic on my neck , i only asked him because my mvd surgery failed andI was desperate for relief of my pain. I have arthritis in my neck and had ruptured disk prior to my T N . I had nerve blocks done that helped a bit, enough to work and function fairly normal . Honestly I didn’t see a connection , but now when I practice proper posture and my neck strengthening exercises I can see a difference in my pain level … I think some how it’s connected? I’m still afraid to get chiro on my neck ??