Dental bone graft, scared out of my mind URGENT

[Nomad]

...develop pain. Sought many different expert opinions. A root canal was performed. The pain worsened. Then a highly recommended dentist pulled the tooth and put in a graph the same day. Then the pain worsened and I also developed a fever. Nothing would budge this fever.

I went to an oral surgeon who is also an MD. He removed the graph and biopsied for infection. I also had an extraordinary amount of bloodwork done by another doctor. No infection, but was determined to have Sjogrens Syndrome, an autoimmune disease. OS/MD said I needed a neurOlogist. I was on Percocet. Worst pain ever!

After trying many horrible medications, neuro put me on Deaipramine (like Elavil) tablets and a compounded cream made out of Gabapentin, Lidocaine and Capsacin. I use this cream on my face several times a day. It has been over one year, so I suspect the damage is permanent. My diagnosis is Atipucal Trigeminal Neuralgia.

I have some Percocet to take for emergency, but rarely need it now.

I'm sorry to hear of another suffering.

When I get to a computer, I'll read of your story and post a link to a good/helpful website of other suffers who offer advice.

Blessings.

 

[Nomad]

Oh, I'll never be 100per cent sure if taking the graft out was the right choice, but I'm almost certain it was, as my fever immediately abated after the graft was removed. It did worsen the pain... But it was already a 9.5 on the scale, just bumped it up to a 10. A total nightmare.

 

[Nomad]

Please note that although I'm very sad that my new mes routine might be permanent, it has been very helpful and has practically restored normalcy..other than both husband and I are leery of dentists. Chose wisely !

 

[1905]

Nomad. I didn't read all the replies but I want to tell you something. When you have a fever, not a terribly high one, it's a sign your body is fighting. It's important to allow it to fight on it's own in order for you to heal. It doesn't mean there is an infection, just that your body is doing it's job and healing on it's own. I did read a reply where after surgery sometimes people get fevers, it's their body fixing itself. I hope this is your case also and there isn't an infection and you're still in remission. I know your scared, I'm sorry you're having to go through all this.

 

[Nomad]

That report was from info from a year ago. A well known surgeon told me to expect a fever for perhaps a month. This went way past a month. Caused doubt about a possible infectiOn. The truth was I had an autoimmune illness. I think having my tooth pulled was very hard on my body. But, then having the graft placed in on the same day was ultra hard and very likely too hard for someone with AI illness. I had active Lupus forv20 years earlier, but was in remission. I was very prone to Sjogrens Syndrome, but did not know I had it. I had the beginning symptoms, which was a dry mouth and reported the previous lupus and new dry mouth to the dentist. For me, a person with AI issues, that graft came too fast and my AI system went haywire. I have daily pain and it has been over a year. I originally went for a procedure with no pain whatsoever. I have not sought compensation, although the damages monetarily, emotionally and physically have been over the moon.

 

[Nomad]

PS my tooth never should have been pulled in the first placed. Probably never root canaled either. The original dentist damaged the nerve while trying to replace a crown. This turned into an emergency neuro situation. Things were further complicated by stupid, greedy, inexperienced (first one) dentists and my issues with an autoimmune diseases...which I made clear on my intake form was a never considered. Chose your dentist wisely!

 

[Nomad]

Amanda 1979: I think my case was somewhat unusual, since I had damage caused by my original dentist from a simple crown (good grief!) AND I had an underlying autoimmune illness. I have a friend with a very mild autoimmune illness that went to a dental university for an implant and to my surprise, they removed her tooth and waited a short while to put in the graft, but never explained why. She did beautifully. I do not know if autoimmune illness or possibly other issues are now causing some dentists to wait a little while before putting in a dental graft.Also, there are more than one type of dental graft...so we might not be talking about the exact same thing. If you are in very bad pain, your nerve might be affected. Sometimes, this goes away. There is a fantastic website called : Livingwithtn.org. I HIGHLY recommend it! I was shocked to see that perhaps 50% of the people there have or had severe nerve pain after going to the dentist. Many had odd experiences, but few as odd as mine. Many had uncaring dentists. Chose your dentist(s) wisely! I hope you are feeling better now! Hang in there!!!!!!! Try to send us an update! Livingwithtn.org
(Thank you Nancy...I hope Amanda sees this. It is awful experience!)

 

[Amanda1979]

This is exactly how mine started....exactly! All with a simple crown. Thank you for the information!

 

[Nomad]

Amanda...I saw many on the TN websites with severe nerve pain after a cleaning or molar extraction. You are the only other one Ive heard if after a crown. My PM is fixed now. Please keep me posted!

 

[Amanda1979]

I will definitely keep you posted!

 

[MP]

Nomad, I just found this online. I had an extraction and bone graft placed Jan 24. And I've been in pain since. I'm still trying to get a doctor to remove it. How soon did you get relief after it was removed and healed up? Did you have them put new bone graft in?

 

[susiestar]

Trigeminal Neuralgia can be horrific, FAR more than many people have any clue of. One of my great aunts was the world's biggest character an she developed TN after dental work. At one point we were VERY afraid something like dementia was hitting her because she lost that 'spark' that made her who she was. It was pain from TN causing it. She didn't want to complain so she hadn't told the doctor.

We did get some relief for her, esp after some other dental work was done. The pain from it could have landed her in some sort of nursing home if we had not figured it out because it had that big an effect on her.

I am glad you have help with this, Nomad. AI truly hoovers. It is such a widespread and scary group of diseases and so often we females are told it is all in our heads until it is way late to have the most effective treatments work. If I ever take up a real crusade it will be to get doctors to stop thinking that women are just exaggerating or it is all in our heads. In my town it is a HUGE problem for female health care.

Amanda, I am sorry you are dealing with this. It is a tough road. Reaching out to others who have been there done that/are-there-doing-that is one of the best ways to figure out what is going on for yourself. Most of my current diagnosis's were found on my own and then I took info to the docs on what was going on and what I thought it was, and THEN they offered help other than referral to tdocs/psychiatrists. You simply MUST be your own best advocate when it comes to your body.

 

[Nomad]

Ok, I found your post MP. And Amanda, please send an update.

I'm sorry to say, removing the bone graft did NOT HELP. The nerve damage was already done. It had nothing to do with the graft. Putting the graft in made the pain a little worse and taking it out,might of made it hurt a little more....but when it gets to that point, hard to say. It was taken out by an Oral Surgeon, who was also an MD. He was young and I suspect the dentist that put the graft in convinced him to take it out, behind the scenes. Overall, my dental care was abysmal. In fact, I had no pain whatsoever, going into this....but a dentist made a mistake, caused pain and then in an effort to get that fixed, I went to other dentists who just worsened the pain. This is because that pain, was NERVE PAIN...the first dentist and maybe the second dentist with-I the same group damaged my nerve initially.

Anyway, the oral surgeon/MD I went to shocked me to death when he apologized for the dental profession. I kid you NOT. He told me I needed to see a neurologist pronto. He was steaming mad. I think he felt tricked by the dentist (the one who put in the graft in the first place) who didn't give him all the details of my pathetic/tragic case. I think he (the dentist that pulled my tooth) was clueless and likely greedy too. I was desperate as I had severe pain and all he could think to do was remove the tooth and put in a graft and he charged me an arm and a leg for this. But, in reality, he didn't see anything on an xray warranting the removal of my tooth.

I went to a very good neurologist who listened long and hard to my VERY long story. How I went to a dentist originally to replace an onlay. I had NO PAiN whatsoever. This dentist insisted on doing a crown and had a freakish time doing the job...went into a couple of months. LotS of weirdness, ODD behaviors and then the pain started. Then the owner took over and she put in a rod of some kind in the tooth. Found out later, the tooth was cracked....don't know if she did that...very possible. I suffered horrendous, electrical pain at that point. It only gets worse from there...and I had a root canal and the tooth pulled. A graft put in and one taken out. In the end, I had crazy crazy CRAZY CRAZY (I asked God at one point to let me die in my sleep) pain.

My neurologist tried many medications and my stomach was a war zone. I was on Percocet, but it either didn't help or barely helped. Finally, I got on a tricyclic tablet and a compounded cream that I rub on my face. In the cream is: Gabapentin, Lidocaine and Capsaicin. It didn't work immediately, but it slowly improved upon the pain. I am diagnosed with Atypical Trigeminal Neuralgia. (Compounded creams are made at compounding pharmacies).

It has been over a year, and the damage to my trigeminal nerve is likely permanent. I still have to take Percocet if I get a trigger like a cold wind hitting my face or accidentally roll over in my sleep and sleep on my right side of my face.

Sadly, of late, the pain has entered another branch of the trigeminal nerve and I have pains in my nose/right side.

I wouldn't wish this situation on my worst enemy.

There are medications that help folks with this. I understand Gabapentin combined with Elavil often works fairly well. But, my stomach just couldn't hack that. I was walking around with an Emetrol bottle, just drinking it straight from the bottle constantly in an effort not to vomit.

The compounded cream (although expensive), plus a medication very similar to Elavil, has given me hope for better days.

I'm sorry about this long post, but if you are still in very bad pain, consider bringing this up to your doctor. Elavil plus a compounded cream with Gabapentin, Lidocaine and Capsaicin in the cream.

Also, there is a very good book called "Striking Back," written by a neurologist, I think from John Hopkins. My case is almost textbook....a mess up at the dentist, dentists assuming it is a dental problem to the point that they pull a good tooth and then needing to get to a neurologist in severe, over the top pain to provided medical assistance.

If you haven't gone already...get to a good, caring, smart and experienced neurologist pronto.

There is an excellent website called www.livingwithtn.org. GO TO THIS WEBSITE ASAP!

 

[Nomad]

I think my time limit expired, but I wanted to say that I had two problems when it came time to remove the graft. I had an unrelenting fever (due to having an autoimmune illness) and severe nerve pain. My case was very complicated. My dental care, particularly with the initial dentists was horrid. And, the subsequent care was terrible. I was fortunate that the oral surgeon/md spoke to me honestly and I got to a neurologist. The oral surgeon/md knew there were major mess ups all over the place. The neuro listened for a VERY long time and took careful notes. I think he was in shock. Re: the graft.... I had the fever for over a month. I was getting weaker and weaker and the pain was hideous. After a month +, I removed the graft and the fever abated, but the pain either stayed the same or got slightly worse. Hard to say, because it was already horrible at that point. I never put a new bone graft in.