Hello TN Family,
This is all new to me. Sorry if this it too long or if I didn't post this in the right topic. My typing skills are also bad :)
I'm a 51 year old man. I have Crohns and Avascular Necrosis and am bed ridden often. After researching the past week, I believe I may have TN/TN2 or something similar.
Since April I have been dealing with positional vertigo and I started having pain with my tooth molar #31 which had retreats root canals previously in 2007 and 2010. My dentist saw a crack in the crown put a temp on it cause she didn't see anything at the roots with a standard xray. At this time, I still had all of my teeth, except my wisdoms that were pulled when I was 17.
After 6 weeks, I was still having pain on the lower last molar on the right #31 and a very mild pain on the molar above it #3. She took a xray of #3 and didn't see anything bad. So she sent my to an experienced Endodontist that saw something in the root and he did a root canal. He said he didn't drill any further the the previous 2 retreats. I guess this was his way of saying, "I didn't hit your alveolar nerve". Now this was the 3rd retreat on this tooth. 2 days after it, the pain got worse and he change the antibiotics. 3 days later I was going so crazy that I ended up getting it extracted from and Oral Surgeon 8 days after the root canal.
After the extraction the pain was still aggressive and generally bad for a month. Had a tingling pain also at the old #31 site. Never really felt anything numbing or burning. More like slight "Burnt pain" on my gums and right tongue like as if your roof of the mouth had just been burnt after biting into a hot piece of hot pizza.
During this time, the OS did 4 panos and a CT scan which came back normal on the extraction site. 1 1/2 months later, the pain seemed a little better but the OS said that the pain should have been gone by this time. So he reopened the extraction site cleaned it up and filed some bone down. After the procedure he said he saw nothing out of the norm. When he injected the novocaine before this procedure I felt a sharp pain that triggered yell! I mentioned this to him yesterday, 9/22/15, about this and he said that he was nowhere near the alveolar nerve and that he always has to physically move that nerve during the many invasive surgeries that he does on patients quite often.
Now 2 months post op from the #31 extraction and I go back in to the OS. At this time it seems like things have simmered down on the #31 site but I'm now having more pain that #3 molar above it so the he does another pano and he sees a round black radio lucency around #3s root tip and needed an extraction or a retreat. He told to me to go back and see if the endodontist for his opinion a retreat. BTW, this tooth had root canal done 15 yrs ago by a Endodotist.
The Endodotist didn't see enough on his xrays and pano to rectify that a RC be in order. The pain at this point was crazy and was only coming from the #3 tooth. I would bite down on a Q tip to make sure it was the right tooth. Pain was aggressive/pressure and was localized. I don't remember if an electric/shocklike pain was involved at this point because this pain was so severe and constant.
So after a CT was ordered. The OS and ED both saw some black areas associated with #3 only and since I localized it to this tooth, they both feel that it was in order for either a RC or extraction.
I took about a week to think and pray about it. During that week I felt the pain starting to resonate now from my top upper right tooth #2 to my front right tooth #8 on 9/2/15!
At this point, along with their diagnosis, I thought that the pain from #3 was doing all of this "new radiating pain" plus my vertigo was very bad. I didn't think I could handle laying almost flat on my back and do another RC so I had #3 extracted a week later on 9/10/15. Now 2 teeth gone.
4-5 days post op 9/15/15, while still feeling the "constant pain" from #2 - #8, I'm at this point feeling the new infamous "electric shock like" pain in the #2- #4 area. I sometimes don't even have to move anything to bring this new pain on. The spikes are short but numerous and progress more during the day. Now my right jaw, right cheek and right temple areas are more sensitive to pain more than before. The vibrations of just walking or driving in the car while hitting just small bumps in the road, bring on this right "Skull/Jaw/cheek" pain. Nothing really numb or burning still.
Just a tingling pain. Not really felt anything numbing or burning. More like slight "Burnt pain" on my gums and right tongue like as if your roof of the mouth had just been burnt after biting into a hot piece of hot pizza. As before.
Things area progressively getting worse daily. I have been unable to sleep on my ride side of my with my face on the pillow.
I started seeing a neurologist for my vertigo last week 9/15/15 at the CL Clinic who specialized mainly Dizziness/Headaches and Tinnitus. I don't believe he specializes in TN though. I addressed my issue with my teeth last week on my 1st visit but the electric shock like pain really didn't start to be aggressive at the time of the visit with him. So he wrote me a script for Vestibular Therapy for my Vertigo and therapy on the right TMJ location. I'm not sure if this will help me if it's TN that I really do have.
I emailed the Neurologist on 9/21/15. He called in and I started 2 days ago the dose of 150mg of Tripetal (Oxcarbazepine) at bedtime for 2 weeks then he said to up it to 300mg at bedtime and call him in 3-4 weeks or sooner for an update.
1)Is there anyone here who has had a similar experience?
2) Does this sound like TN TN2 or something else?
3) If it is TN2, I saw that Dr Neil Martin from UCLA on youtube say that drugs like Tegretol are not very effective in TN2 patients? Is this the case with any of you TN2 patients who had dental issues?
4) I live in NE Ohio. Does anyone have suggestions on who I should start with in OH or anywhere? Neurologist, Radiosurgeons etc... I will travel if needed but it may be hard cause of my ongoing Crohns issues. (I already checked out the MDs here on this forums list :)
6) Are there any other forums which may also be helpful to me?
From the bottom of my heart, any help would be greatly appreciated. I don't know anyone who has this.
Sincerely,
Tracks
Hi Tracks,
I'm so sorry to hear about all you have been through with your teeth. I'm afraid I don't have much to offer other than that I have ATN/TN2 due to dental work and have never felt the things your are describing.
I would however, suggest that you discuss the feelings of burning like/tingling sensations in your mouth and tongue, especially on the one side, with your neurologist as soon as possible. I say this in consideration of the fact that you are dealing with an auto-immune disease and I know from my own experience that things can change on a dime. If this ordeal is not related to that or the avascular necrosis (which I admittedly don't know anything about), then you will clearly need to pursue other possibilities. Either way, your neurologist should be able to help you.
By the way, your post was in the right place and just fine :)
I hope you get this sorted out quickly,
Cathy In MD
Welcome to the family,
I am a TN2 person, age 25. My pain is very different from what you are having, but mine has been very different than many. I have a deep ache all over the lower left side of my face (jaw, cheek, temple, side of nose, teeth, etc) I rarely get burning, just phantom muscle cramps and bone aches.
I was put on Oxcarbazepine, and it made me too dizzy to walk or keep food down long before I got to a dose that would help with my pain. My doctor says that reaction is unheard of, so it likely will not be a problem for you, but is something to watch for seeing as you are already dizzy.
Good luck and I hope you can find some relief soon!
I would say that my pain is very much like you have described above. I have often explained it as a feeling that my face was going to explode. The pain is, as you said, deep, penetrating, and for me, constant without medication at this point. I do get jolt every now and then during lightening storms and various weather changes. All of this triggers migraines and neck and shoulder pain. No burning or tingling.
Cathy In MD
itwouldntbemakebelieve said:
Welcome to the family,
I am a TN2 person, age 25. My pain is very different from what you are having, but mine has been very different than many. I have a deep ache all over the lower left side of my face (jaw, cheek, temple, side of nose, teeth, etc) I rarely get burning, just phantom muscle cramps and bone aches.
I was put on Oxcarbazepine, and it made me too dizzy to walk or keep food down long before I got to a dose that would help with my pain. My doctor says that reaction is unheard of, so it likely will not be a problem for you, but is something to watch for seeing as you are already dizzy.
Good luck and I hope you can find some relief soon!
Thanks for your posts Cathy and itwouldntbemakebelieve!
The Neurologist is aware all of my symptoms. Yeah, I just thru in the Crohns and avascular necrosis info for added info and don't think they are related much to TN other my having a immune system overall.
I think I'm more of a candidate of TN2 because it's ongoing with more spiking as the day progresses. I dunno. Still trying to figure it out. Anyone please jump in on this if it sounds similar to TN2.
itwouldntbemakebelieve, How was your TN2 brought on and diagnosed? If you are still on Oxcarbazepine, how long did it take and what dosage was it before it became effective?
The pain is radiating some up to my right eye some, to my right temple and below my right ear. Vibrations from walking, and being in the car while the car is hitting small bumps in the road hurts my whole right side of the skull/ jaw/ but mostly upper right teeth. I'm still only 2 weeks post op from the huge top right molar extraction and don't know if this is just more referred pain added.
2 days ago, I saw my oral surgeon again. He said that if he would have hit and damaged the alveolar nerve during a novocaine injection when I flinched 1 month ago, my lip would have been numb. He also said that if he doesn't think that the Endodonist who did the RC on June 15 did anything like drilling too far or filling the tooth too much with meds on my bottom #31 tooth bringing the alveolar into play. Then again, these specialist refer business back and forth to each other and are business friends and the OS wasn't in the room for that RC. Who knows. It seems like this was them time frame when most of the painful symptoms basically started. Ugh....
I start vestibular therapy today for my postional vertigo and the script also includes TMJ work. I read part of a post on this forum recenty, dated around Sept 1 I think, that mentions that therapy of the neck could help TN. Gonna give it a shot and will post if it helps any.
Hello saw the part in your story about avascular necrosis and was just wondering if u ever had a biopsy of your bone in your teeth area like maxilla or mandible (jaw)…im getting one soon incase blood supply is being cut off from jaw or teeth somehow causing pain and i read this can be awful pain and can slowly show up over time. Idk but i had a neck injury then the pain started in my upper jaw/teeth then found out i have antiphosphlipid antibody syndrom aka hughs which causes thick sticky blood and can also stop blood from circulating correctly too so you never know but necroses can show up pretty much anywhere including above teeth so its something to think about hope this can be of help…im so sorry ur going thru so much i pray for those on this site all the time…
God bless