How worse the trigeminal neuropathic problem can be?

[may916us]

I am so glad that I found this website. I think I am developing the neuropathic pain, after four years of the oral surgery done. I brief my story as below:

I lose most my upper teeth after years of mistreatment and miscare. The doctor suggested me to have a bone graf surgery to add the bone to my upper jaw in order to do the implant and rebuild my teeth. The surgery did not go well. My left face became tight, numb and pain with all kinds of sensational feeling after the surgery. I talked with several medical professionals, and was told the nerve could be injured and nothing you can do. You can only hope it's getting recovered by itself.

I blamed myself very much for doing this surgery these four years. I tried to ignore the tight, numb and discomfort, and hope to get better. However, three months ago, I started found the nerve pain even went to my head. My left face and nose are getting more sensitive and tickling. The pain gradually expands to my whole left side of head and neck, even some of my right side head. Now I found my left leg start having that sensational feeling. Last week I finally found a doctor prescribed me Neurontine and started medication with 300 mg 3 times a day.

I consider myself healthy. I didn't have any other problems except the problem of my teeth. I barely saw medical doctors --- only saw dentist frequently.

Here are my questions:

1. Why the neuropathic problem starts after 4 years of the surgery done? Previously I had that discomfort of nerve injury, but only local to my left face. Am I getting worse and worse? Can Neurontine cure my problem? Has the nerve injury on the face more risk than it on other areas? Am I gradually paralyzed or disabled from my head pain? I really feel that I am getting worse every day. Is there any other way to prevent it?

2. Is there a way that the injury can be verified? My doctor said it is the second nerve of my trigeminal nerve. Since it is a sensational nerve, not a sporting nerve, it's dificcult to verify the injury from the surgery. I need a proof, so I can get legal help. I didn't see any doctors to evidence the mistake of the surgery, because I never thought of any legal settlement. I only blamed myself. Now I started spreading my problems to a few friends, and they all said I need to get compensation from the surgen. I spoke with several attorneys. They said the case can not be established because it is over 2 years since the surgery. Can anyone refer me an attorney?

3. My current doctor is practicing physical therapy with Ph.D in neurology. However, he never treated face injury problems before and he can't guarantee anything. Can anyone refer me a doctor specialized in the rehabilitation care of trigeminal nerve and face injury in the surrounding area of central Jersey?

[This message was edited by maylin on 05-26-04 at 10:01 PM.]

[alan]

Neurontin or other meds won't cure a nerve problem - they can only relieve the symptoms.

I hope Dr. Young has some answers for your other questions, and I hope you find a medication to provide some relief. Have you seen a pain specialist? Some of them actually try to be helpful.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[metronycguy]

you need to see a pain managment doctir or neuroligist Trigeminal Nerve pain is treated with different meds, i was prescribred a earlier anti seizure med when i had it. fortunately it went away quickly

[may916us]

Thanks for you guys reply my posts
Though I am not SCI patient, at least I am benefit from the information of Neurontine.
My doctor prescribed it as nerve treatment. Now I know it's only for pain relief. So far I can still resist the pain or by using some over the counter drug. I only worry that the pain will eventually imperill other parts of my body. I've stopped Neurontine medication.

I'll pray for you SCI guys.

[David Berg]

I only know one person around here that has trigeminal neuralgia. She's a cute little girl in my neighborhood that has it as the result of injuries in the OK City bombing. She was in a day care directly across the street. Her mother is a nurse and when the pain gets really bad during one of her episodes (the pain is not constant), she has to go on....I think it's Tegretol. It has limited effectiveness.

[metronycguy]

i had it for a couple months , fortunately it went away. i think i got it from getting my head pile drived into the sand in a kayak in the surf, the symptoms started about a week later. it felt like my head was slapped with a carding brush, a wire brush used to clean, than shocks, and tingling i started getting these sensations every hour on the right side of my scalp , than it spread down my face to my eye socket. luckily it wasn't extremely painful like my neuropain has been, more uncomfortable and unsettling, very distracting

[Broknwing]

David-
It bothers me that you say this young girl is taking Tegretol. Not because I don't think that it will help her situation, it very well may be the only thing that does. But, because of the long-term negative effects that Tegretol & some other anti-convulsants can have on women. I don't know the exact reprecussions because I admittedly have not researched them for myself, but what I do know is that my neurologist(female) while I was in the hosp from my accident was very disturbed that I had been on Tegretol(& some of the other anti-convulsants that I had been prescribed) in the past. She informed my family how bad it can potentially be for females, especially if they ever plan on trying to have children. If you could let this little girl's mother know about this, so that she can research the long term effects for herself, you may be a lifesaver in the long run. I hope that this may help others, as I would hate for any women to go through the possible problems associated with Tegretol.

'Chelle

[David Berg]

Originally posted by BroknWing:

David-
It bothers me that you say this young girl is taking Tegretol.
I haven't discussed it in much with her mother, but I do forward info to her about neuropain research. I'll admit, I'm not familiar enough with tegretol to have known abuot problems like you mention. I do have the impression that the girl only takes the med on a fairly rare basis. A lot of her episodes are short enough that Tegretol wouldn't really have a chance to kick in, so her mom waits to see if it looks like it's going to be a bad round of pain.

Her mom also knows of people with trigeminal neuralgia who opted to have the nerve severed, which in the specific case of this condition might actually be a viable option. The mom isn't going to make this decision for her daughter, but wait until she grows up and let her make the decision on her own. Hopefully, by then there will be better treatments!