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Old 11-18-2007, 08:32 PM #1
lmcat6 lmcat6 is offline
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Default new member posting - in pain and confused

I am new to this site. I just posted on the Member Introduction forum, but I thought it was for the TN site not the whole site only. So, I am posting again here since this is the forum in which I think I belong.

I had an upper molar tooth extracted (it was complicated - did not come out in one piece) on Oct. 2 by a periodontist. He also placed an implant in that spot on the same day. At day 10, I was in pain and saw a different periodontist who said an x-ray of the area showed bone loss. He had me come back every 3-4 days for an x-ray and by the 3 week point, he said the bone was looking better. However, I was still having constant pain and a squeezing feeling and feeling like something was there that wasn't. Finally they removed the implant and did a bone graft in the area. Things got worse after that for about 1 week, then slowly started to get better, but now at the 6 1/2 week point, I am having problems again. I again now have a constant ache in the area, some soreness and maybe "burning," and what I think is some lack of sensation in the area - still feels like something is there that's not. I can feel pain inside my left cheek all the way up to the area where the implant was placed/removed with the worst pain at the extraction site. The pain gets worse when I lie down, bend over, and move around alot. Basically, I "feel" that side of my face all day.

I've been to a neurologist (per the periodontist's request) and he wasn't very helpful - just right off the bat, without talking much or examining me, he said that I had "jaw and nerve pain from the dental surgery," though he wrote Trigeminal Neuralgia on the receipt. I also saw an oral surgeon who did a full x-ray and said the bone looks good. The oral surgeon did not think TN was a good diagnosis as he said I would have much more severe pain than I told him I had.

I also went to see an ENT doctor to confirm I didn't have a sinus perforation from the dental surgery. He used a scope to look in my nose and said that he didn't see any mucous buildup and did not suspect sinus perforation, but to come back in 4 weeks (that would be this upcoming week) if the pain wasn't gone and he would order an x-ray of the nasal cavity.

I know that my mouth has been through alot these past 7 weeks, and I would expect it to take awhile to heal, but the hardest part is that there isn't clear agreement about what is going on at this point. The neuro says TN and the oral surgeon says no. Yesterday was a very bad day in terms of discomfort. Today isn't great, but not quite as bad. I have a high tolerance for pain, but one can only take so much.

The neuro did prescribe Neurontin for me, but I am very hesitant to take this strong med without a firm diagnosis and also because I rarely take meds due to the fact that I am very sensitive to them and have bad reactions and side effects.

I apologize for such a long introduction email. I'm glad to have found this site and appreciate any advice and/or insight. Thanks.
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Old 11-18-2007, 09:58 PM #2
Jeanc Jeanc is offline
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Default

Hi, and welcome, but sorry you've had to find your way here as it means you're in pain.

From you're description, you probably don't have "classic" Trigeminal Neuralgia or TN1 as that is identified by intense, shocklike pain that in most cases comes in short attacks, especially at the onset of the condition. More likely your pain is a result of the dental work, now classified as "Trigeminal Neuropathic Pain" or TNP, defined as " facial pain resulting from unintentional injury to the trigeminal system from facial trauma, oral surgery, ear, nose and throat (ENT) surgery, root injury from posterior fossa or skull base surgery, stroke, etc." See the following links for Oregon Health and Sciences University's New Classification of Facial Pain and Diagnostic Questionnaire -

A new classification for facial pain

TN - Diagnostic Questionnaire

The neurontin is really pretty mild in terms of side effects, but does take a while to get used to. It actually may help determine the cause of your pain - i.e. nerve or bone. If your pain is neuropathic, the neurontin should help but may take a while to get to a therapeutic dose so titrate up slowly so you get used to the fogginess a little at a time. Your body will acclimate over time. If it doesn't help, then you need to keep looking for the cause. But do give it a chance as it may take a while to get your blood levels up to the right level to overcome the pain. Either way, your condition may improve with time and getting the pain under control with medication may help to calm the nerve down if it's not permanently damaged.

I'm not a doctor or dentist, just giving you my experience as I had face pain after dental work, but completely different circumstances so it may or may not be relevant to your situation, but find a neurologist or facial pain center that works with face pain and TN patients so that they can help you sort things out.

There are some introductory "sticky" threads at the top of the TN forum - the Tips for Newcomers will direct you to the Trigeminal Neuralgia Association's (TNA) website where you can order the book Striking Back: The Trigeminal Neuralgia and Face Pain Handbook. Be sure to order it from the TNA and get the 2004 edition. It has a lot of information and while it is mostly about classic Trigeminal Neuralgia, it will inform you about that and other face pain so you can help the doctors determine what your condition is. Take it with you to your appointments - many doctors just don't see TN and aren't familiar with it or its variations - hence the confusion in your diagnosis. Many think that TN is classic TN and that only. There are other varieties, so find a doctor who is familiar with them. The TNA may be able to help you find one.

Best to you - good luck and keep us posted.

Jean
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Old 11-18-2007, 10:21 PM #3
lmcat6 lmcat6 is offline
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Default RE: new member posting - in pain and confused

Hi Jean,

Thanks so much for the reply. I took the questionnaire on the TNA site earlier tonight and it actually did say "Trigeminal Neuropathic Pain" as you suggested below!!! I also used that site to get a name of a neuro here in town, but the only one on the list is a neurosurgeon. Do you think a neurosurgeon can help even if I am not ready for or in need of surgery?

I also ordered that book earlier. I am glad you suggested doing that as now I feel even better about the purchase! I will check out the links that you included. It's sad that others like yourself can see there are more than one form of TN, but doctors cannot.

I hope to see my regular doctor (internist) soon and to discuss the neurontin medicine with him. I have already missed so many days of work and been sick from all the pain meds and drugs, that I cannot afford to take something else that will make me sleepy, foggy, and unable to drive and work. However, I do appreciate very much the info that you provided about this medicine!

Thanks again for replying. I've been in this situation before with medical issues and not knowing what is wrong or what to do and that just makes it worse and more stressful. Having others to talk to and learn from really makes a difference.

Many thanks!

Quote:
Originally Posted by Jeanc View Post
Hi, and welcome, but sorry you've had to find your way here as it means you're in pain.

From you're description, you probably don't have "classic" Trigeminal Neuralgia or TN1 as that is identified by intense, shocklike pain that in most cases comes in short attacks, especially at the onset of the condition. More likely your pain is a result of the dental work, now classified as "Trigeminal Neuropathic Pain" or TNP, defined as " facial pain resulting from unintentional injury to the trigeminal system from facial trauma, oral surgery, ear, nose and throat (ENT) surgery, root injury from posterior fossa or skull base surgery, stroke, etc." See the following links for Oregon Health and Sciences University's New Classification of Facial Pain and Diagnostic Questionnaire -

A new classification for facial pain

TN - Diagnostic Questionnaire

The neurontin is really pretty mild in terms of side effects, but does take a while to get used to. It actually may help determine the cause of your pain - i.e. nerve or bone. If your pain is neuropathic, the neurontin should help but may take a while to get to a therapeutic dose so titrate up slowly so you get used to the fogginess a little at a time. Your body will acclimate over time. If it doesn't help, then you need to keep looking for the cause. But do give it a chance as it may take a while to get your blood levels up to the right level to overcome the pain. Either way, your condition may improve with time and getting the pain under control with medication may help to calm the nerve down if it's not permanently damaged.

I'm not a doctor or dentist, just giving you my experience as I had face pain after dental work, but completely different circumstances so it may or may not be relevant to your situation, but find a neurologist or facial pain center that works with face pain and TN patients so that they can help you sort things out.

There are some introductory "sticky" threads at the top of the TN forum - the Tips for Newcomers will direct you to the Trigeminal Neuralgia Association's (TNA) website where you can order the book Striking Back: The Trigeminal Neuralgia and Face Pain Handbook. Be sure to order it from the TNA and get the 2004 edition. It has a lot of information and while it is mostly about classic Trigeminal Neuralgia, it will inform you about that and other face pain so you can help the doctors determine what your condition is. Take it with you to your appointments - many doctors just don't see TN and aren't familiar with it or its variations - hence the confusion in your diagnosis. Many think that TN is classic TN and that only. There are other varieties, so find a doctor who is familiar with them. The TNA may be able to help you find one.

Best to you - good luck and keep us posted.

Jean
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Old 07-08-2010, 12:10 PM #4
Illana Illana is offline
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Default How are you Feeling?

Hello Imcat. I am just going through something similar as you and I was wondering if you have been able to find any relief? Are you feeling better. And if you are, are you still taking medication or has the pain subsided.
Thanks for your response...
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