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Geniculate Neuralgia or Sphenopalatine Ganglion Neuraglia anyone?


#1

Ok, sooo here is a short version of my story. I had crazy crazy pain where I always said the pain is deep in my head - like i'm being stabbed with an ice pick but I always said the pain was deep in my head .. yet I also felt like all of my teeth were throbbing and killing me and as well. My attacks would last 1-15 hrs roughly, but it was the burning stabbing continous throbbing kind of pain, not so much the electric zapping. I got diagnosed with having somewhere in between type 1 and type 2 TN. I then got started on gabapentin and carbamezapine, which only worked a few months before they became totally useless. I later on went to have the MVD surgery. I was told they did find a blood vessel compressing the nerve so I thought I was cured. WRONG !! Right after the surgery the pain was worse than ever !!! but eventually settled down a bit. Now 1.5 yrs later I still get the crazy stabbing pain DEEP in my head feeling it through my ear. I recently went back to see my neurologist ( my neurosugeron just wants to cut the nerve which terrifies me )neurologist now thinks I might also have sphenopalatine ganglion neuraglia. Does anyone have that or is anyone familiar with it ?? From what I read and from someone whom I've spoken to about my pain they think it might be geniculate neuralgia based upon the location of my pain being deep in my ear. Does anyone have any experience or knowledge of these two neuralgias ?? If so, is what I described above sound like one of them ???

Thanks in advance !!!

Julia


#2

Hi, Julia,
I’m sorry that the MVD did not work on the stabbing pain in your ear. The stabbing pain in my ear felt like the largest kitchen knife I own going into my ear. It felt wide and sharp. The MVD was done post two gamma knife sugeries. The MVD, performed by Dr. Carson at Johns Hopkins, brought immediate relief from this stabbing pain. The pain resulting from the failed gamma knife surgeries, however, did not go away. I’m left w/ atn type pain along with anesthesia delorosa. I’m sorry that you’ve not found relief yet, but keep pounding the pavement for information and you will find answers. It’s taken ten years to come to a place of manageable pain and longer windows of time that come from medication trials and errors.
Many prayers are with you!
Sincerely,
LyndaS


#3

Hi there.

I have atypical Tn, left side, and recently had a sphenopalatine ganglion block that was unsuccessful.

From what I learned, the ganglion is a little ball that sits in a "cave" in the mandibular area of your face. The ganglion holds all of the nerves that are "outside" of your brain. My dr. told me that because of my first TN attack, the pain had gotten worse over time, and eventually the nerves going in and out of the ganglion were on overdrive from pain. So much pain was going in that the nerves going out eventually started outputting pain unnecessarily. He said the block would help to "reset" it, like restarting a computer.

I had the typical pain for 3-5 days and then felt okay for a week. Last week the pain came back severely, sending me home from work.

My neruo thinks another would not be beneficial although most people have two. He sent my MRI to a neurological radiologist and is checking for some problems with my arteries.

maybe this "sphenopalatine ganglion neuralgia" is just TN located in that specific ganglion? That's my best guess. That is where I have most of my pain, as well. The "meaty" area between my top and bottom jaw is the worst, and i spend days digging my finger in there looking for some relief.

s

I too, had an MVD, and was in more pain after it failed.

The only other option I have is to implant the deep brain nerve stimulators.

I wanted to wait until I was older and had tried every option, but my life is being taken over by this disease and I want kids someday, and being on opiate therapy is not going to help me with that.

Hope you start feeling better and get some answers.

Tammie


#4

Julia,

Sorry to be delayed in getting back to you. I wanted to talk with a couple of people who have an even deeper research background in some aspects of TN than I do. The following is edited from one of the responses I got:

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Sphenopalatine ganglion is behind the palate, in the nasopharnyx area. [One of the doctors on the TN Association MAB] has been trying to get gamma knife approved for treatment of this area; he believes compression, or otherwise irritation of this ganglion causes some of the murkier facial pain. Symptoms attributed to this condition are pain in the eye, back of nose, upper teeth, gums. there can also be a weird pseudo-motor component, such as sweating, flushing or tearing of the eye.

A doctor can test the patient by swabbing a long q tip in Lidocaine and inserting it deep into the nasal cavity. if the pain stops, then it's worth exploring as a possibility.

Pain in the ear can be tricky. The 5th nerve has a lot of cross wiring around that area, so a true 5th nerve problem can be felt in the ear. Tt could also be the glossopharyngeal nerve which radiates pain to the ear and throat. Geniculate neuralgia is also a possibility, but the surgical team would (or SHOULD) have seen a compression during the MVD. Dr Janetta would frequently cut that nerve during MVDs to give patients who had ear pain more "bang for their buck".

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Hopefully this will give you something to discuss with your current neurologist...

Regards, Red


#5

Hi Red
It’s been awhile but now I am writing to you since last we spoke post left side MVD petrosal vein compression 5 areas in 2011. Had some relief but has never resolved. Sept 2017 had gamma knife done which I now have more pain V1 branch which I did not have before. The ear stabbing pain is terrible. I have tingling and pain along that affected branch now. Originally it was V2 branch that was my problem. I’m seeing a neurologist at tufts in Boston she put me on indomethacin 50mg tid along with tegretol 1000mg daily. No relief. I wish it had never had gamma knife at all . I now have occipital neuralgia which is troublesome for me. I now get a buzzing in my ear before the attacks.? Don’t know if there is compression again at that site Iran arterial compression. My neurosurgeon has left the state and me holding the bag. Lost don’t know if there are any options left for me
My Best
Joanne
Tatto20