I am just seeing this post....can you tell me what your symptoms were after the MVD surgery??
Confirmation that doc screwed up is also good in the sense that you have professional affirmation about what you are feel and thought happened so you are not always wondering what really happened which can be a real mental drain, plus you can focus on fixing the problem and/or pursuing legal action with expert testimony as support.
Sleeping seems out of the picture right now as I am still awake. My syptoms after the surgery came on gradually. Immediately after surgery the whole side of my face from forehead down was numb but it felt like glass was breaking in my chin. That all started to subside, but then I started to get pain in my mouth- gradually at first. Gradually then it came on fully and didn't stop about 3-4 months after the surgery. The whole right side of my mouth got it ( just the lower) right side palate, right side tongue, right side lower gums. right side lower teeth and about a nickel spot in my mouth (yet on the outside) is all painful but numb. Sometimes the pain is real low, sometimes real high but it is ALWAYS there and never stops; ever. Those are my symptoms :).Lately, I have been getting my original trigeminal neuralgia twinge back in my jaw too. I wish this circus of pain would end soon. I did have the typical electrocution feelings in my mouth and the tip of my tongue burned. The burning and twinges of electric shock have disappeared, so I am still hopeful that my nerve is trying to heal.
Hi - any news here? I think I may have AD too from a Jan 2013 MVD + Line-of-Sight Injection and not sure what to do. I get burning, stinging, pinching in my numb areas (mouth, gums, tongue, lips, chin and check). Sometimes it stings like a bee sting. Also all my numb areas feel heavy and pressure upon them. My teeth feel like someone is actively pulling on them. Confused, scared and not sure how to process all this or what to do
Albee,
I am so sorry that this is happened to you. While I cannot confirm that you have AD, I can give you advice and my advice is squeak and squeak some more. If the neuro that you currently see which may be the neuro that did your surgery does not give you a diagosis, then find aonther neuro. I should have found another neuro pronto and moved on. No neurosurgeon wants to admit that they caused a patient AD. Dr. H, the doc that did my surgery actually told me my diagnosis was pain. He leaned in close to me and said "its called pain Jodie. Its just pain". Pain is NOT a diagnosis. I asked him to his face if it was anethesia dolorosa and he said "no, I did NOT cut your nerve" as he was walking away. You dont have to CUT THE NERVE to cause AD and he knows that!
Google your location and anesthesia dolorosa or stimulator and your location. That is how I found my current doctor. It has been only 8 months for you though and I guarantee you are going to hear "give it time, give it time".
There actually IS a sure fire way to know if you have AD. Get injected, by an oral surgeon or whoever into the nerve closest to your pain. If you do not feel the shot, it does nothing for you and you continue to have pain, you have AD- and the nerve is completely dead.
I am not suggesting you go out and get a stimulator, but if you find a Neurosurgeon who knows all about them AND implants them, you probably just found a neurosurgeon that can diagnose you and give you answers. Are you on any type of meds?
Just wanted to let you know I had my PNS trial on the 16th, and the permanent on the 21st.i was told I would be awake for the trial, but I was asleep for both. It is working wonderfully well!
Best of luck to you.
Christine, thank you for letting me know. Remind me, did you have AD? Was it in the mouth or located to the jaw and facial area, etc? I am so scared of this surgery. I don't feel like anything BAD is going to happen to me, just that it is not going to work for me because my trial did not go well at all. The trial worked while on the table, as soon as I stood up literally- as soon as I got off the table, my fingers were being stimmed, my elbow and shoulder and even neck but it was no where near where it should have been ( mouth). Yet, they called it a successful trial! The doctor is positive he can capture my pain with a final Spinal Stimulator Implant. Mine is going to be put in through removing a piece of my skull bone in the back of my head, threading the wires down through the removed skull bone, shaving off the top of my C1 and C2 to use them to hook my wires into then threaded over my right shoulder. The battery will be placed in my chest. He STILL does not think he should put it in my chest as I have no fat there... not even boobies LOL, and really aimed to put it in my butt, but I didnt want it threaded CLEAR under my skin from my neck and CLEAR down to my butt.
Was this just four DAYS ago that you had the final implanted? You are up and around easy. I SO wanted the PNS, but was given a resounding no because of the location of my pain. He knew that he would have to place it in the top of my chin right under my lip and there is NO fat there and said I would have issues with it eroding so I was denied the PNS. In my case, the MCS is my only choice but man did I want that PNS!
Audarah, I have Bilateral ATN. After an MVD on the right side, I was still left with the constant burning in my scalp, along with feeling of pressure in my teeth, and face. Unfortunately, I have had intermittent ATN pain on this side for almost ten years, but due to my attributing it it to my Chiari Malformation, I did not seek any doctors advice until it became very severe as was accompained by the classic shocking pains of TN1 in December 2011. The damage done to my nerve over such a long period of time was not helped by the MVD, but the shocks have stopped. My neurosurgeon suggested I try the PNS to help manage the pain.
I had my permanent stim implanted this past Wednesday , August 21, and flew home from NY on Friday the 23. The procedure was really easy! I do have pain from the incision where the battery is implanted in my chest, and some discomfort from the incisions from the two leads ( one in front of my ear, one above my ear), bit otherwise feel pretty good.
I hope the stim works for you. I know you are worried about the procedure,but stay strong, and I think you will be glad you went through with it.
Best of luck!
Christine
Shindig, they have a guy at Swedish, and one at Virginia Mason who do the same procedure. One of the nurses finally told me that because of the time crunch I am facing with the guy at U W leaving the country. TL
shindig said:
Shindig, I went to Dr. Jeffrey Brown in NY. He is one of the leading experts in the treatment of TN, and sees patients from all over the country. I saw him for a consult in November of 2012, and had the high resolution MRI at his office. It was then that I was properly diagnosed with bilateral ATN, and MVD was scheduled for January. I arrived on a Thursday, and had the procedure on Friday.i had my post op visit on the following Thursday, and flew home on Friday. My local,GP removed the stitches 10 days after the procedure. Luckily, I am originally from NY and was able to stay with my sister, who lives just a few minute away from both the hospital, and Dr.Bs office.. I did have some complications with the incision, as my body decided the internal dissolvable stitches should be pushed out, not dissolved, but I never had any issues getting Dr. Browns staff on the phone to help me get everything resolved locally. I went back to see him in July due to my continuing pain, and it was then that he suggested the PNS unit. I flew home, discussed it with my husband, and made all the arrangements to have the procedure over the phone. I had all my pre op testing done at home, and the results were sent to NY. According to Dr. Brown, there are only a few doctors who are using this therapy for TN. His practice is pretty much dedicated to TN patients, so I feel he is the best doctor available to me.as I said before, he does see patients from all over, and his assistant Kathy is very helpful in coordinating the logistics for those who have to travel. I made the decision to see Dr.Brown after medication failed to give me pain relief. I am allergic to Tegretol, and maxed out on Gabapentin. I did not want to start with opiates, as they really don't seem to work for TN. As for the Gamma knife, I never even considered it, as I have not heard good things about it at all. I don't know if it is possible for you, but I would recommend you consider seeing Dr. brown for a consult. Best regards ChristineThat's awesome Christine, you flew to NY to get it done? My neuro is recommending a pain specialist in Portland OR, I'm curious how the long distance thing works. Did you fly out there multiple times prior to first surgery and the PNS install? Or send your records which they reviewed?
The neuro keeps bringing up the gamma knife but I don't want to do it. I've exhausted the meds that have worked, now he just throws more opiates if I complain about pain. I have to take off work tomorrow to go pick up an oxycontin prescription at his office, because he can't mail it to me or call it in. It's a real pain in the rear and taking them makes me slur my speech which is no good at work.