Mayo Clinic Connect
I wanted to share my experience with this condition…
Severe but treatable pain in the face and head.
Liked by Om Lee, lady1lake
I just joined the discussions here. I had the disease TN. on the right side of my face. The Neuosugeons from UC Davis in Sacramento Ca, (after many surgeries) finally gave me a brain Ritzotomy that cuts 2 out of 3 branches in my face. It ended the pain. I now have numbness and Anastesia Delrosa or burning face syndrome as a complication.. My question is can the TN come back on the other side of the face? I have pain when I chew on the left side.
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Thanks for your reply. I haven’t seen a Neurologist since my Ritzotomy surgery 5 yrs ago. That is where they have to ‘cut’ 2 out of the 3 nerve branches. The blood vessels hit that nerve thus causing the TN pain. I had tried EVERYTHING. (including the Gamma knife) to no avail. All the surgeries I had…. didn’t work!
Finally they did the Ritizomy. It is hard to explain the Anathesia Delrosa. If you look it up, it will help you understand somewhat. (Try looking up ‘burning mouth syndrome also.)
Do you have AD? Not everyone has it. Did you get nerves cut?
I have chronic back pain also, so thru’ a managed pain clinic, I use Oxycodone for my pain. I also use a Lidocaine 2% external gel for the mouth pain when it burns too badly. I have good days and bad days. The cold weather makes a difference. (I live in Calif, so I don’t what my excuse is.)
I do not recommend opiates however. A mouth guard is what I am going to look into for the AD or burn mouth pain so I quit chomping on my inner cheek. I don’t know what I will do if I haveTN coming back on my left side now. I take Lamictal pills instead of Garabenten. Lamictal calms the cheek pain. It doesn’t make me too sick like the rest of the pills
Best of everything!
I should’ve introduced myself. I’m the Community Director here at Connect. I don’t have TN or AD. Knowing how challenging it can be to manage anesthesia dolorosa, I was wondering how you deal with it. Thank you for the details. It sounds like your managing it in multiple ways. Thank goodness you live in warm climate so you don’t have the extra burden of cold winters making it worse.
Is the pain on your left side persisting? Do you plan to see a neurologist?
How are you doing Lana? It’s been awhile since we’ve heard from you.
I just wanted to let you know that we’ve been continuing with the updates to the Mayo Clinic Connect website. As I was reviewing the discussion threads I found this long and helpful thread of other members of Connect sharing about their experiences managing trigeminal neuritis/neuralgia. I moved your messages to join this group so you can share with them.
By adding the @ symbol before a person’s username you can tag them into the conversation. I hope the @yearock @zane @jenkob and others will return to join the discussion again.
Connect Community Director
l am new to this blog still trying to explore my option with dealing with TN. I have seen a neurologist staring in January. The pain is unbearable pain is in all three branches mostly 2 and three. Taking 1200 mgs of Tegretal daily. I have good days and bad. Saw a doctor who recommended surgery as my best option. Not ready for this looking at RFL any other ones have this done with success? I cannot drive the side effects are terrible. I need to get back to work soon. Any ideas?
Liked by Colleen Young, Connect Director
I feel sooo bad for you because I was once in that particular hell! I couldn’t take the oral meds so I had 2 mac degeneration surgeries where they put teflon on the blood vessels so that the nerve could be protected. Some say it works. I had 2 that didn’t. I had a gamma knife procedure that didn’t work either. So after 5 years of horrible stabbing pain I finally asked for a Rhritzomy….where they finally cut the nerve so that they didn’t touch anymore aganist the blood vessel. It is the only procedure that finally gets rid of TN.!! Your mouth is numb and there maybae some complication, but it beats the suicidal thoughts you feel when you get searing thunder pain stabbing thru’ your face. Talk to your doctor about that option.
Thanks my plan is radio frequency lesioning I still need to speak with the neurosurgeon. it seems less invasive than the others. I hate to hear the different procedure you went thru and they didn’t work. my face swells and gets really hot before the pain hits.. It started above my eye and forehead and has made ts way down to the cheek and jaw over the last few months. My lip and inside mouth kicks in and there is no way to brush teeth or eat. Can’t touch side of my face or drink shearing pain. Sorry don’t mean to be long winded no one understands this I think they think I am just crazy.
Liked by zipmac
ANYONE WITH THIS DREADFULL. ISSUE
I moved your message to this ongoing discussion thread about trigeminal neuralgia where you can connect with other members such as @Restless67 @cagon @calebba @jenkob @zane @omlee @nomore.
How long have you been dealing with the pain? What treatment has helped?
I have an unusual case of trigeminal neuralgia. I tried most of the medications and all failed. I recently had microvascular decompression surgery which has relieved the deep, excruciating pain but I still have sinus fullness and pressure on the left side of my nose and into the maxillary sinus area. I also experience discomfort around in in my left eye. I have also had three sinus surgeries and my sinuses are now normal. I’m not sure if what I am experiencing is trigeminal or if it is something else.
Hello @shelley701! Welcome to Mayo Clinic Connect. You will notice that I moved your thread to an existing conversation taking place already. You will find the information within this thread helpful.
I would like to introduce you to other members here in hopes that they will share their medical experiences with you- Please meet @007007, @Restless67 @cagon @calebba @jenkob @zane @omlee @nomore.
Hi, my concern is with trigeminal neuralgia. I was diagnosed 7 years ago and have taken gabapentin and lamictal for it until recently when my primary physician had me stop the gabapentin completely and cut the lamictal dosage in half. The pain/attacks have multiplied exponentially in severity and frequency brought on by something as simple as a light breeze or brushing my teeth or talking. I know it seems like the obvious solution is to start back on the meds but it was another serious health concern that led the dr to having me stop them. I am considering an appt at the Mayo Clinic and am interested in hearing from those who either suffer from this condition or have been treated for it as well at the Clinic. Thank you for your help to all who reply.
Hi LaNita saw your post and curious…..i have been suffereing from face pain after dental freezing for 3 years now….at first it was dizzyness and some face pain but now 3 years later is still dizzyness and severe face pain and headaches…saw 3 neurologists they never even touched my face….!!!!! i had to ask the 3rd one to touch the sore area and he said it was “a bone” i wrote him a nasty 6 page letter….went to a dentist on Monday and he said trigemenal neuritis and my God…they should have been able to diagnose this!….anyways now going to see a maxifacial surgeon or pain management doc as he said they treat this now with Botyox…but what caught my eye is now as of february i have this severe pain in my trapezius muscle……serious pain…nothing on xray nothing on ct scan nothing on ultrasound…finally after 5 months my doc injected it with cortisone and it lasted about 3 months but now he doesnt want to do it anymore !!!!!! i dont get these Doctors…he told me to come back in 3 months so asking…how did your trapezius pain start and does botox work for the pain ?
Hi! I am new to this conversation as well as to TN. I am in NC so closest Mayo Clinic would be FL.
I had a horrendous cold in January this year which developed in to what was thought to be a sinus infection. However, I was not new to sinus infections and the facial pain I was having was unlike anything I experienced before. After taking various antibiotics for over two months with no results as far as this mysterious pain was concerned, I was sent to an ENT, who's diagnosis was that there was no sinus infection and suggested I be sent to a neurologist. I saw him last week. He instantly cam up with TN. I'm being sent for a brain MRI with and without contrast next week. In the meantime, he gave me Tegretol 200 mg 2x a day for the pain. Well, that's been an adventure, as the nausea was fierce. Think we have under control, but the pain relief isn't all that great. I just don't understand how this happened all of a sudden like it did. I am 66 and the only other health issue I have is mild COPD for which I use the new Trilegy inhaler. I am just so confused about all of this. Thank you for tolerating my lil rant. 😬
Hi, @zipmac – wondering how things went with your brain MRI? How is it going for you with the carbamazepine (Tegretol)?
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