Trigeminal Neuralgia (sorry if I spelled it wrong)
 

This is my first time visiting this website, so please bear with me if I posted in the wrong forum.

In 1994 I had reconstructive surgery on my face and this included cheek implants. Since the surgery, I have gone to several doctors about severe pain in my face. X-rays have shown that the screws under the cheek implants have come out and when I smile, laugh or try to bite into a sandwich the screws are hitting a nerve - causing SEVERE pain that literally brings me to screaming agony. I've already looked into having the implants removed, but my health insurance will not cover and it and right now we can not afford this option.

I've gone to a doctor who is 'numbing' the nerve with an injection. This works for maybe 4 months and then the pain is back. The actual procedure of the getting this injection is horrible - I don't know how much longer I can go through this procedure.

Can anyone else relate to this? Any ideas on what I can do? The doctor said I could have the nerve cut which would result in permanent loss of feeling. At this point that doesn't sound too bad. As I write this post I'm in tears because I yawned and I now have lightning bolts of pain on each side of my face. Can't take this anymore....

Any help or advice is greatly appreciated. :)

Hi Needpainrelief,
I'm so sorry that you found your way to us. I'm glad you're here. While none of us here can tell what the diagnosis is, we can all relate to agonizing facial pain.
What they gave you sounds like a nerve block. Yes, they are VERY unpleasant, when the doctor is good and finds the nerve well. Nerve blocks can last for varying degrees of time. I pray that yours lasts for a good long while.
Trigeminal Neuralgia is VERY hard to treat, so let's first hope that it isn't that.
Here's a medical paper to read to get familiar with the various conditions related to the trigeminal nerve:
http://thejns.org/doi/pdf/10.3171/foc.2005.18.5.4
There are subcategories that do refer to injury of the nerve. That you have it on both sides is curious, because TN is hemispherical, meaning that the nerve on each side leads to only that side of the face. I am sorry if indeed they hit both sides.
If it were me, and I am saying ONLY if it were me, with what I have learned about nerve pain, I would seriously find a way to get those implants out before they do any more damage (like taking out a second mortgage seriously). It may cut the odds of having permanent damage. You asked for advice and that is mine, point blank.
That the doctor (plastic surgeon?) said that you should have the nerves cut would lead me to seek out a Neurologist ASAP. They know nerves, and again, with what I have learned about nerves, the LAST thing that I would do is have them cut. That is the last thing that most people with TN would do, and many don't, because of a type of nerve pain that can be worse than TN.
This is alot to take in, and I don't mean to scare you.
So please, get to a very good neurologist, or a good Head and Neck specialist, as soon as you can. Do not wait until the nerve blocks wear off. And do consider getting the implants out quickly if you can.
I really hope that this helps, and I don't mean to scare you, but if you can head permanent damage off at the pass, then you have dodged a BIG bullet.
I will check back in in a day or two.
Take care,
Lily

Lily,
Thank you so much for your response. I did see a Neurologist and we tried pain relief through medication, but I don't respond to medication well AT ALL (I've had side effects that I can't deal with). The doctor I am seeing is an Oral & Maxillofacial Surgeon. I had upper and lower jaw reconstruction - during the procedure the implants were put in. During the original surgery, many of my nerves were cut so I don't have too much feeling in my face right now, but I can feel pressure (if that makes sense). So, permanently cutting the nerves isn't THAT big of a deal for me since I've been dealing with the loss of feeling for several years now. Then again, permanent means I can't change my mind down the road...

I've thrown around the idea of getting the implants taken out and from what I am understanding this is major surgery. I have never seen a plastic surgeon and never thought about doing so to be honest.

I'm meeting with the Oral Surgeon this afternoon and hopefully I'll have some more answers.

Thank you again for your post, I really appreciate your advice!!! I'll let you know what happens this afternoon.

Dear needpainrelief,
I am really glad to hear that you are not suffering from the nerves that have been cut, but you do seem to be getting extreme pain as well from them Cutting the neve that IS bothering you could have consequences. There is a condition called Anesthesia Dolorosa, that can occur when nerves are cut. Please google these words and read up on it before seeing your doctor. You need to know about it to make an informed decision with him/her. I am SO GLAD to hear that you are seeing one today - that's exactly who you need to help get this figured out.
Best of luck today! :hug:
Lily

Please find a doctor who will sedate you for procedure
 

Hi Dear NPR,
I really do not understand why this keeps happening, pain doctors making our pain worse.

Here you are going to a PM doctor , who is to help you manage and reduce pain, and yet, he is actually increasing your pain..
from both the terrible acute pain of the process its self, and the pain caused by the anxiety and stress following and preceeding each procedule.

If it sounds like I truly understand ,It is because I had the same thing done to me 23 times.

It was like torture. If the pain was not so severe i would have never gone back but what can we do - you cant live iwht that pain? well short versoion the doctors cold turkey metod caused my condition to worsen severely, I have full body rsd now. :When i went to him I had rsd in right leg with a spread to left. When this was finished i had full body.

Here is waht is sad, there is no reason in hte world you should feel a thing. My new pm doctor , puts and iv in ,and knoks me out. I never feel anything.

Ill bet that the doctor is not giving anesthesia but is billing the insurance company for it, there for increasing his profit.

There are many doctors who would not consdier doing this procedure with out sedation. you will have to find.one OK.

I hope this helps you. sincerely cz

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