Re: left face pain....again

[Guest guest]

Holli,

I have similar sensations in my left arm. The burning feels like a

caustic liquid has been left on my skin, followed by numbness, and then

itchiness. I'm pretty sure it's pinched nerves in my neck. I saw a

neurosurgeon and he wants to operate and remove discs and install plates and

screws. For now, I've decided to pass on that option.

My sister (CMT2, like me) had an ear infection that resulted in Bells Palsy,

which numbed half her face. When they cured the infection, the palsy got better.

Could you have something along those lines, with either an infection that comes

and goes, or a pinch nerve?

O

[Guest guest]

Hi Holli,

This sounds like trigeminal neuralgia. My brother had this too. It is CMT

related. My brother started with medication (lyrica, neurontin) but when these

drugs were not enough he went through different surgeries. The first 2

surgeries, gamma knife and rhyzotomy helped for about a year each, but then the

pain was back. I

n traditional trigeminal neuraligia, the nerve is cut near the root, and these

methods don't help for CMT related TN. The third surgery was performed 2 years

ago, and this time the pain nerve was distroyed in the face, and this method was

great - for the pain. It is completely gone, and that is wonderful of course.

But the face is also numb, there is no feeling at all and it can be a bit

dangerous if something gets into the eye, which can become infected.

This has happened, but my brother still thinks that the surgery was worth it. He

got his life back! Unfortunatelly, the doctors don't know anything about this

disease (CMT related TN). But if you refer to trigeminal neuralgia, you might

be able to get the correct medication.

Unfortunatelly all TN drugs are very bad for CMT symptoms, they make you tired,

dizzy and the balance will become worse. They must be taken daily, because they

are preventive, so you can't take it when you are in pain, it won't help unless

you take it daily. My brother felt this was very hard to cope with, because he

could not work when taking the drugs, so surgery is really an alternative.

I hope you will get help now! I know the pain is unbearable, it is the worst

pain known in the whole world!

Beata

[Guest guest]

Hi Holli,

 

Is it possible that you have TMJ?  Or some type of cervical degeneration?

 

It sounds like the nerves are being irritated (mandibular/cervical/lingual).

 

What you describe isn't unlike what happens to my left leg when I get a flare up

that stems from my L4-S1 area.  It starts with the numbness and a heat sensation

in the leg.  Then advances to severe pain, i.e. shooting/on fire.

 

I'm wondering if you have something similar going on in your cervical or

TMJ region.

 

Maybe you need to see a dentist and/or ortho spine doc to check it out.

 

From: Oltmann <joltman1@...>

Subject: Re: left face pain....again

Date: Thursday, June 4, 2009, 4:42 PM

Holli,

I have similar sensations in my left arm. The burning feels like a

caustic liquid has been left on my skin, followed by numbness, and then

itchiness. I'm pretty sure it's pinched nerves in my neck. I saw a

neurosurgeon and he wants to operate and remove discs and install plates and

screws. For now, I've decided to pass on that option.

My sister (CMT2, like me) had an ear infection that resulted in Bells Palsy,

which numbed half her face. When they cured the infection, the palsy got better.

Could you have something along those lines, with either an infection that comes

and goes, or a pinch nerve?

O

[Guest guest]

Hi Holli,

This may be a longshot, but I am wondering if this is some kind of allergic

reaction - either to a food, a substance, a material,environmental (either

indoors or out), or stress related, etc? Have you kept a journal about these

'attacks', what preceeded them, what you were doing, what stopped them, etc? It

might offer some clues. Of course I am not a doctor

But whenever I have had wierd pain or wierd reoccuring pain/then relenting, my

journal has been a big help in controlling reoccurences. Most of the time it has

been some sort of allergic response, not a neurological one.

Gretchen

[Guest guest]

Correction on my post - I should have said 'neurosurgeon', not 'ortho surgeon',

since this could possibly be some kind of neuralgia issue in the

cervical/cranial area.  But, since you are a doctor, you probably knew that

already!

From: Oltmann <joltman1san (DOT) rr.com>

Subject: Re: left face pain....again

groups (DOT) com

Date: Thursday, June 4, 2009, 4:42 PM

Holli,

I have similar sensations in my left arm. The burning feels like a

caustic liquid has been left on my skin, followed by numbness, and then

itchiness. I'm pretty sure it's pinched nerves in my neck. I saw a

neurosurgeon and he wants to operate and remove discs and install plates and

screws. For now, I've decided to pass on that option.

My sister (CMT2, like me) had an ear infection that resulted in Bells Palsy,

which numbed half her face. When they cured the infection, the palsy got better.

Could you have something along those lines, with either an infection that comes

and goes, or a pinch nerve?

O

[Guest guest]

Thank you all for some very helpful thoughts. I have to say, I can thank this

particular sensation for my finally being correctly diagnosed with CMT. It lead

me to a neurologist who got much more interested in my other symptoms which led

to nerve conduction studies and eventually to genetic testing. The face pain

became of mild interest to the neurologist who just says that it doesn't seem to

be in any of the description of symptoms for CMT. It may not be on the list, but

please, a whole other reason for this? I doubt it.

It has been my theory for a while that TMJ and a pinching of a nerve in the

region of the jaw is likely. I have been treated for TMJ in the past and got

that from my Dad, as well as the CMT. I went to the dentist and found that my

current insurance does not cover TMJ treatment. Yay. So much for being a doctor.

My uninsured patients get better treatment.

I also get a similar thing in my left leg when it is flaring, probably because

of a pinch in the lower back. I had a disc that ruptured removed at L5-S1. So

the observation of the similarity there is wholly supported.

I have looked into trigeminal neuralgia but have been told again and again that

this isn't characteristic and that it typically occurs as zaps of painful shocks

instead of the burning/numbness. The drugs and surgery for that sound about as

bad as the symptoms. I don't know if the trade off would be worth it. I guess I

need to be sufficiently miserable first. Not sufficiently miserable yet.

Gretchen, good point, I have tried to think of what may precipitate this. It

seems so random. Although it may well be related to clenching and grinding the

teeth at night in my sleep. I may need to just bite the bullet, as it were, and

pay out of pocket for TMJ treatment and at least a night guard. Interestingly, I

now get " flares " from the case of shingles I had last year which was also on the

left (what is it about the left side of my body?)in the scalp area. That, I've

noticed happens when I'm really stressed out. So far they have not coincided to

any great degree. That's a good thing. The whole left side of my head would be

on fire. That may make me sufficiently miserable!

Thanks again for the thoughtful comments. Today I am down to just lips and

tongue so it's much more tolerable. The stabs through the eye were the worst.

Holli

>

> OK, I know I've posted about this before. But you all don't mind if I vent a

bit, do you? I have had burning pain/numbness that waxes and wanes on the left

side of my face. It always comes and goes in an orderly way: left tip of

tongue-->entire left tongue-->left lower lip-> upper

lip-->cheek-->eye-->ear-->inside of throat, all on the left. Well, today it is

waxing big time. The tip of my tongue is densley numb and everything else burns

like fire. I am having a new lovely sensation of that stabbing, lightening pain

randomly shooting through my left eye. Grrrrrr. No one knows why this happens.

My neurologist just shakes her head. This has been going on at some level for

about 5 years now. I don't want to complain to my family, they can't help, so

this is my outlet. Thanks for being here.

>

> Holli

>