As you can tell, I am new here. I suffered with ATN for six years in the third trigeminal branch. I only had typical TN for about 2 months, believe it or not- before it turned into that constant, aching, throbbing, unrelenting pain. It was intermittent however, but when the attacks would come they would hit for sometimes weeks or months at a time.
Finally, I had enough and went to see a neurosurgeon in September of 2010. Because the neurosurgeon was running behind, an intern listening to all of my symptoms. At the end of the appointment, the neurosurgeon finally came in, did NOT listen to my symptoms again and told me about MVD. I had to ask him what my alternatives were and what the risks were. He told me "well all the other procedures will make you numb for life, this wont" AND.... HA!
On the prep table September 28th of this year, the neurosurgeon believed he was dealing with Typical. He THEN asked me my symptoms. When I told him, he said "hey thats ATN, I dont know if I can cure you now". He didn't cure me, but rather disabled me.
I ended up having a stroke on the operating table close to my brain stem that he claims he didn't realize. I'm 35. He never came to see me after surgery, and I was never admitted to ICU. I kept complaining about not being able to use my right side and how my chin felt like glass had shattered in it, only to be told that was normal and would return. They discharged me, and after three days of still not being able to walk, talk or write, I went back to the same hospital- this time the ER. The ER called in a neurology team and there is was discovered that I did have a stroke on the table. I was left with a VERY rare condition called dysmetria and an even rarer symptom that is being studied by speech pathologists: foreign accent syndrome. I went from speaking American ( born and raised in Pennsylvania) to speaking British.
The complete surgery was a flop. Absolutely nothing went right for me, and just yesterday four months after the surgery my incision opened up at the bottom and was leaking. I had to go to my regular doctor who took care of it but insists I find another neurosurgeon pronto. My neuro that did the surgery dismissed me the day his intern took out my staples saying dont come back unless you have another brain problem. I would consider having a stroke a brain problem. The surgery also left me with two internal carotid aneuryms or infundibulums ( dialation) that were not there on a previous MRA scan I had done.
After surgery, my face was numb as he told me could happen. Actually all he told me that could happen was hearing loss, or a numb face - so I accepted that. It did wake up, almost all the way except for the area around my mouth, some of my chin and a small spot along my mandible. I did NOT come out of surgery with mouth pain. ( chin pain yes). I went to my regular doctor for the chin pain and she gave me neurontin 300 mg a day in October. Come November ( mid november), my mouth started to hurt me where it is numb at ( some of my teeth, gums and lip is numb on the right side, although my lip has started to wake up. Also my tongue tip is numb). She increased the neurontin and my symptoms skyrocketed to constant 24/7 pain and burning in my mouth. Considering that my chin stopped hurting and almost has completely woken up, I am hoping and praying that weaning down on the neurontin and getting off of it will take me back to NO pain in my mouth.
I went to my dentist two weeks ago who said that the neurosurgeon gave the third trigeminal branch one heck of a "ding" and that it disturbed my mandibular and lingual nerves. He then did a panorex on me and stared at it for like five minutes. He believes that my jaw was fractured on my right side close to my mouth. I have an oral surgeon appointment coming up on the 27th. Once he seen that, he said he thinks the anesthisiologist is to blame for this one and potentially even my stroke as she appeared incompetent and too forceful to him.
I also woke up from surgery with staples in my forehead from them having to pin my head from moving. Did anyone else have this?
I may never know what happened to me, but I'm not falling for the "it will be ok, your mouth will wake up" speech from my neurosurgeon who seen me for five minutes once I was diagnosed with a stroke. Not only do I have the mouth problem, but still have the same pain in my jaw as I had pre surgery.
I wish I never, ever had this done! I did not know or hear of anethesia dolorosa before, and he never told me this could happen. In fact, he told me if I didnt let him do the surgery, eventually the pain was going to come and not leave at all. Kinda like NOW?!
Any suggestion or possibilities?How long did it take for your MVD to work? Could this just be inflammation? Wondering about trying steroids.
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Permalink Reply by elaine48 on January 24, 2012 at 9:20pm
Cleo said:
no it did not show on xray or mri. my lower jaw bone had to be cut and lifted up to expose the nerve. the scarring was on the split in the nerve. are you talking about facial scarring from your facelift? how long ago?
This is internal scars.,there are lumps under the gumline, by the ears, umder the jaw and by the mouth. I realized that the back of the neck has cranial nerves extending into the shoulder and some are by the esophagus. facelift was 2002. I am not having an easy time finding a surgeon as you can imagine.
Permalink Reply by Cleo on January 25, 2012 at 12:06am Well, I have just added a facelift to my bucket list of things NOT to do along with the spider vein on my cheek.
Permalink Reply by JessicaG on March 7, 2012 at 3:10pm WOW! What a story — I'm so sorry for everything that you've been through. 6 weeks ago I went in for MVD for my ATN however there was no compression to be found so my surgeon manipulated my nerve bundle in order to "re-shock" my nerve. I was told that many times, this totally calms the nerve down. So far, I've been feeling pretty good. I've had a little bit of pain but nothing like I was having pre surgery. I saw my Dr. last week for my post op appt and I was very concerned that I was feeling some pain and he ensured me that nerves take a long long time to heal, so I'm not sure if that is consoling for you at all. My mom had a tumor removed off of her hearing and balance nerve in 2010 and she had some facial paralysis and they made her wait 9mo. before seeing a facial therapist, just because they wanted her nervers to stay calm and heal as much as possible. Her facial therapy has really helped her a lot. Maybe that is something to look in to? I've thought about it ... I'm so sorry that you are going through this.
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