Ear Pain (Geniculate Neuralgia)

Comment

Comment by Tree69 on May 16, 2013 at 4:40pm

Thank you Red that is very helpful.

Moderator Comment by Richard A. "Red" Lawhern on May 16, 2013 at 10:00am

For Tree69 and others: 

Stereotactic radiosurgery focuses a large number of gamma ray or fast electron beams on a 2-mm spot along the trigeminal nerve.  This spot becomes a lesion (scar) with the die-off of the side of the nerve that was most exposed to radiation.  There is some degree of spill-over into adjacent tissues.  Some people respond to Gamma Knife by developing adhesions or arachnoiditis, where the nerve becomes "stuck" or "scarred to" surrounding tissues. 

RF Rhizotomy, on the other hand, creates a non-penetrating lesion on the nerve by using RF energy to heat up a small electrode that is threaded into contact with the nerve through a "cannula" or hollow needle inserted through the cheek and guided to the area under a fluoroscope.  Ideally, the nerve is NOT totally severed, even though some numbness is to be expected.  RF Rhizotomy has a significantly better record of longer term outcomes than Gamma Knife or Cyber Knife.  With GK, about 50% of all patients who have an initial relief of pain will have recurrence within three years.  With RF Rhizotomy, I've seen stats indicating 50-70% remain pain free at seven years. 

In both cases, Tree69's concern for further damage is appropriate -- and it's shared by some neurosurgeons, particularly for Type II TN patients who most likely have some type of systemic or distributed damage in the nerve already.

I hope this casts some useful clarity.

Regards, Red

Comment by Tree69 on May 16, 2013 at 9:50am

Sharon I guess all you can do is try and see if it relieves any pain. Probably won't hurt. Upon examination my doctors never see any fluid or infection either. Many many wasted trips and money to the doctor for what i thought must be an ear infection. If you listen closely or if they are speaking clearly they will tell you they cannot see all the way into your sinuses or into your ears. True proper diagnosis can only be done through imaging.
I could be mistaken but I believe radiosurgery is different from rhizotomy. Radiosurgery radiates the nerves into submission and into dying down. Rhizotomy I believe severs the nerve closer to the root. Can't say I've ever heard anybody have any luck with the glycerol injections; maybe look at some other posts.
Not saying I might not do it but I am afraid through the face procedures causing more damage. All we can do is make the best educated decision for our symptoms. And make sure our doctors and surgeons are the best out there.

Comment by Granny on May 16, 2013 at 3:47am

Tree69, thank you for the explanation on how to relieve ear pressure. Also, Red, the specialist I am seeing does have 1 year in neurotology, so hoping he understands this one. My ENT referred me to him and my neuro wanted me to see someone in this specialty.

     So true about doctors who specialize, I have seen 2 neurosurgeons who knew nothing about GN but this guy does know what this one it, how much experience he has is another question and has he ever treated it I did not ask. I did call the office and asked for the FIESTA MRI, where he is sending me for another scan does not do it so still waiting for a call back on this one.

     Tree69, if an ENT says I do not have fluid in my ears but I still have the pressure will this technique even work for me?? Thanks, Sharon

Comment by Tree69 on May 15, 2013 at 11:31am

"Tree69, what is this thing you can do to drain your ears to alleviate the pressure?? My ENT checked my ears and there is no fluid, or is there? I would like to know more about that, please post your search on this. Thanks, Sharon"

Sharon-

 

Anything one can do to elevate sinus pressure usually will also help the ears. I suffer from sinusitis, and allergies along with my Rt sided TN1, left sided TN2, scalp pain, ear pain and headaches, neck and back pain. So the old cold and flu tricks help the extra pain trapped fluid causes.

1.Decongestants

2.Extra fluid intake

3.NeilMed SinuFlo nasal rinse-www.neilmed.com(found in most drug stores)

4.Hold nose closed and blow hard-if you can get it to pop you will feel relief immediately. (similar to when your in airplane and need your ears to pop)

5.Chewing gum is out of the question but you can mimic it and or move jaw around.

6.Manually drain your Eustachian tubes- The tube drains into the back of your mouth and down your throat. The idea is to create a suction by pressing on the tube a couple of times thus creating a vacuum effect. Use a clean hand or a glove reach back with your thumb or comfortable finger, find the jaw hinge at the end of your teeth slide finger towards throat finding the soft fleshy part before the gag place and press on it a couple of times. If the suction works you will taste the drainage and need to spit. I cured my sons antibiotic resistant ear infections this way.

7.Inhalants (not on skin, use a tissue in your pocket or put it on clothing) to make your nose drain-My favorite is Olbas Oil-Olbas.com, then Vicks.

 Well, give it a try see what works for you.

The more I learn about the Trigeminal Nerve system the more I understand. We have a bunch of nerve branches winding around thru our sinuses.

http://www.youtube.com/watch?v=Sy059eeqoJs watch this video. See what you can learn about your nerves and symptoms.

Healing together, Tree

 

Moderator Comment by Richard A. "Red" Lawhern on May 15, 2013 at 7:03am

Sharon, very few ENTs have serious training in neurology.  So my baseline answer would be that unless the ENT you saw has done an extra year of residency in the subject, then NO, he or she probably isn't authoritative on TN.  Likewise be advised that you don't want a neurosurgeon who deals primarily with elbows, knees, or lower back.  Some actually are that narrowly specialized.

Regards, Red

Comment by Granny on May 15, 2013 at 4:22am

     Thank you Red, I had something with me about MRI and forgot to ask the doctor what type he was doing. I was just so glad he was going to look again with a new scan.  He did take the finding I had on the first MRI for the left side seriously but wanted to find proof of it on the right too. The ENT I saw simply told me to ask for a specific MRI at that level. I understand FIESTA is a 3-D scan, I did have some info on that to offer this doc. I am concerned my insurance may not want to pay for another scan of the brain unless the order is written differently.

     When I posted yesterday, I was surprised to read so many posts about this thing having other symptoms that are not listed with the usual ones, the ear fullness/pressure and bitter taste.

     I would have never thought it was this one if I had not read about it on this support group site first and you have been giving me some direction in this area. I don't always have the stabbing pain but found some info about it starting that way and then turning more constant. This neurotologist did check my tmj joints, they are quiet, I am tight with a limited opening, but I had a horrible stomach flu a week ago and after vomiting over a dozen times my jaws were aching and the temporal muscles were sore but it went away. I told him I can massage tmj pain in the muscles but this one will not respond to touch, if anything you can't stand to touch it.

     To your knowledge do you believe ENT's and ENT neurosurgeons have a grasp on this one verses a neurosurgeon? Two neurosurgeons I saw simply ruled out TN and ATN and sent me back to pain management. Thanks, Sharon

Moderator Comment by Richard A. "Red" Lawhern on May 14, 2013 at 4:31pm

Granny, one repeat FYI:  especially if you're dealing with pain in your ear, it's important that you get the gold standard of MRI procedures:  sub-millimeter FIESTA procedure both with and without contrast agent, and with special magnet weightings to emphasize the brain stem area.  The radiologist should also be looking for evidence of a compression on the nervus intermedius, which branches between the 7th and 8th cranial nerves.  Compressions there can be a bear to find on any MRI.

Regards, Red

Comment by Granny on May 14, 2013 at 4:27pm

Jean, I have that metallic taste or I describe it as being bitter...was one of the first symptoms I had with ear pressure/fullness for months before the ears started to hurt. I did google on this and found it related to GN. Sharon

Comment by Granny on May 14, 2013 at 4:24pm

Tree69, what is this thing you can do to drain your ears to alleviate the pressure?? My ENT checked my ears and there is no fluid, or is there? I would like to know more about that, please post your search on this. Thanks, Sharon

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