Geniculate Neuralgia Story

My wife first experienced the intense stabbing pain in her left ear in May 2011. Over the next year we saw neurologists at the UCSF Medical Center. After 1 1/2 years they could only say that it was atypical trigeminal neuralgia. During this time, the pain would sometimes become so intense it would cause my wife's blood pressure to nose dive and she would pass out. Over the next year and half, the episodes became more frequent and more intense. Numerous doctors, including a hotshot ENT, looked at her left ear and could not find anything wrong with the ear itself. Pain meds were only partly effective and did not stop the very intense episodes. After much frustration I spent hours on the internet trying to find a more concrete answer. I came across this forum and found a discussion that led me to geniculate neuralgia, and that some of the experts were at UPMC in Pittsburgh. After conferring with my wife’s GP, I sent an e-mail to Dr. Michael Horowitz at UPMC. That was on 9/10/12. He responded within an hour, and gave me his cell phone number which I forwarded to my wife’s GP. Next morning they talked on the phone for a half hour and Dr. Horowitz diagnosed it over the phone as classical geniculate neuralgia. That same morning, we contacted UPMC and made an appointment for the microvascualar decompression surgery. We flew out to Pittsburgh from San Francisco on Sunday 10/14/12 and she had her surgery this past Thur 10/18/12. She has had no ear pain since the surgery, though she has some hearing loss. We have our follow-up appointment tomorrow, then fly back to SF on Friday. While we’re hesitant to say that the surgery was 100% successful at this time, we are very encouraged so far by the absence of any ear pain. We need the risk of losing some hearing in the affected ear before the surgery and felt it was a trade off the could be tolerated if the surgery was successful.

Your wife is lucky to have you. Best wishes to both of you. You describe the terrible ear pain I've had so, possibly, your research has helped more than one person.

Did anything ever show up on an MRI, MRA, etc.? Where did the dr. do the MVD?

Thanks.

The MRI and CAT scan did not show anything. Apparently that is part of the diagnosis. The absence of anything on the MRI rules out other causes such as tumors. Dr. Horowitz did the surgery at the University of Pittsburgh Medical Center, Presbrytarian Hospital. Google it and check out their web site on geniculate neurolgia. Everyone at UPMC was awesome, extremely responsive. Good luck.



Santa Rosa Steve said:

The MRI and CAT scan did not show anything. Apparently that is part of the diagnosis. The absence of anything on the MRI rules out other causes such as tumors. Dr. Horowitz did the surgery at the University of Pittsburgh Medical Center, Presbrytarian Hospital. Google it and check out their web site on geniculate neurolgia. Everyone at UPMC was awesome, extremely responsive. Good luck.



Lee Ann said: Thanks. Where exactly did he find the problem...how many were there? Sorry to be a pest, but it's been tough.



Santa Rosa Steve said:

The MRI and CAT scan did not show anything. Apparently that is part of the diagnosis. The absence of anything on the MRI rules out other causes such as tumors. Dr. Horowitz did the surgery at the University of Pittsburgh Medical Center, Presbrytarian Hospital. Google it and check out their web site on geniculate neurolgia. Everyone at UPMC was awesome, extremely responsive. Good luck.

Dr. Horowitz describes geniculate neuralgia as irritation of a nerve called the nervous intermedias by a dislocated blood vessel. It is located in the same proximity as several cranial nerves behind the ear, including the 5th cranial nerve. In contrast, trigeminal neuralgia is similar nerve irrition but of the 5th cranial nerve. The nervus intermedias transmits ear pain while the trigeminal nerve transmits facial pain. When Dr. Horowitz does the MVD surgery for geniculate neuralgia he snips the nervus intermedias, moves the offending blood vessel out of the way,and inserts teflon sponges to keep the blood vessel separated from all the nerves.

Lee Ann said:



Lee Ann said: Thanks. Where exactly did he find the problem...how many were there? Sorry to be a pest, but it's been tough.



Santa Rosa Steve said:

The MRI and CAT scan did not show anything. Apparently that is part of the diagnosis. The absence of anything on the MRI rules out other causes such as tumors. Dr. Horowitz did the surgery at the University of Pittsburgh Medical Center, Presbrytarian Hospital. Google it and check out their web site on geniculate neurolgia. Everyone at UPMC was awesome, extremely responsive. Good luck.

Thank you for posting this information. This sounds familar to what has been happening to me. Mine evolved over time. Was Diagnosised with TN then got worse was diagnosed Atypical. Then my ear went from often feeling like an ear infection also being hypersensitive of noise. Noise being a trigger for ear pain and face pain. feeling the noise in my face transfer all the way to my sinuses via nerves. No one knows if I really have GN or if its the TN just really bad. Scheduled for MVD for TN in Feb. 2013. Hope it might help the pain noise and my ears give me. Any comments welcome.

Because the trigeminal nerves and the nervus intermedias are located very near each other, it seem plausible that you may have both at the same time. If you your surgeon doesn't plan on snipping with nervus intermedias as well as separating the blood vessel, then I would suggest getting a second opion from neurosurgery folks at UPMC. While there are several institutions that work on TN, UPMC is the only one I found that really specializes in GN. Good luck. Happy to help with any other questions.

I will discuss this with my NeuroSurgeon. I am in good hands here in California Kaiser Redwood City. They are leading edge top of the line. They are doing things others are not and are in compitition with Stanford and UCSF. PA is too far for me to travel. He sees the compression in my MRI.So maybe he will see more when he gets into my head, and now I can discuss it with him in a more educated way.

Had botox injections done on my scalp and forehead for extreme scalp pain with migraines and cluster headaches. Its been three weeks now. It is working and I am getting 25-50% relief in pain and have reduced some medication. But I have noticed that it has also helped the noise sensitivity some and the light sensitivity. Vision and swelling better and eye not drooping.

Using Ketamine cream on face for pain with a lot of pain reduction. Not able to tolerate antidepress or anticonvolsants. So I am happy to have a combination of things to help. Baclofen and botox for scalp. Ketamine for face. Tramadol/Naproxen for swelling and pain. Xanax for anxiety and Panic attacks. Pain gets high and I pass out so I have to deal with that part and know all my triggers. So Avoidance is the other thing. I take Imitrex for bad migraines. Have some morephine but it does not work any better than the tramadol.

Take Care, Tree

Good luck to you Tree. I would suggest you go to UPMC's genicula neuralgia's web site and print out the information on the nervus intermedias and give that to your neurologist. If the do the MVD surgery and do not severe the nervus intermedias, it may solve the facial pain but not the ear. Of course i don't that, but would raise it as a concern.

This one post has brought hope, and reduced anxiety for me.
I am BUMPing it so that others may read it.

Smash

This is an encouraging post, I have a suspect blood vessel that may be causing my ear pain, mine is atypical though, not stabbing all the time, but building intensity with pressure/fullness in my ears and a bitter taste. An ENT neurosurgeon just ordered a 3-D MRI of the IAC level. Did your wife have any other problems with her ears other than the stabbing pain? I already have mild pure tone hearing loss, I would trade this pain for some hearing loss, so I am encouraged for your wife. By the way my doctor talked about this place you all went to and it is the finest, he is a neurotologist and has had some training in PA, not Pittsburgh but he knows all about the research being done there so I think I am in good hands. MRI results May 31st. Sharon

I have the same problems you all have described. I called UMPC and Dr. Horowitz is no longer there. But Dr Raymond Sekula is doing the same procedure. I called them last week, and I am scheduled to go there on Monday June 10, have an MRI and meet with Dr Sekula, if all looks like I need surgery, I am already on their surgery schedule for the next day. It's generally a 2 day hospital stay. I'll keep you posted on how my visit and hopefully surgery goes next week.

The surgery is called: Left retromastoid craniectomy with microvascular decompression
http://www.upmc.com/patients-visitors/education/neurology/pages/und...

http://www.neurosurgery.pitt.edu/person/ray-sekula
http://www.neurosurgery.pitt.edu/

Video similar to this surgery:
http://www.youtube.com/watch?v=s7fUqg2aEkc

Gail, just saw your post, this is where I want to go if everything fails in Florida. June 10th is just around the corner. I will pray for you. I have watched that surgery on you tube, tried to find again but could not so thank you for posting the link.

Mine started with ear pressure and fullness, bitter taste then out of nowhere this ear pain, first stabbing, now more constant, low lying but can go from a 3 to an 8 in a minute. I do have some facial pain.

I have googled this site at UMPC so many times, I think you will be fine with this new doctor, and I am just feel very optimistic for you. I told my daughter I am just about ready to go out of state, I am just getting the big run around in Florida, jumping from one specialist to another and getting nowhere. I am scared to do surgery but if you come out of this with big gains, hooray for you! Looking forward to your post. God bless you. Sharon

Gail C said:

I have the same problems you all have described. I called UMPC and Dr. Horowitz is no longer there. But Dr Raymond Sekula is doing the same procedure. I called them last week, and I am scheduled to go there on Monday June 10, have an MRI and meet with Dr Sekula, if all looks like I need surgery, I am already on their surgery schedule for the next day. It's generally a 2 day hospital stay. I'll keep you posted on how my visit and hopefully surgery goes next week.

The surgery is called: Left retromastoid craniectomy with microvascular decompression
http://www.upmc.com/patients-visitors/education/neurology/pages/und...

http://www.neurosurgery.pitt.edu/person/ray-sekula
http://www.neurosurgery.pitt.edu/

Video similar to this surgery:
http://www.youtube.com/watch?v=s7fUqg2aEkc

Gail C, who have you seen so far about the ear pain? I know you can call UMPC, but I also see they do want records and MRI's done. Sharon

Gail C said:

I have the same problems you all have described. I called UMPC and Dr. Horowitz is no longer there. But Dr Raymond Sekula is doing the same procedure. I called them last week, and I am scheduled to go there on Monday June 10, have an MRI and meet with Dr Sekula, if all looks like I need surgery, I am already on their surgery schedule for the next day. It's generally a 2 day hospital stay. I'll keep you posted on how my visit and hopefully surgery goes next week.

The surgery is called: Left retromastoid craniectomy with microvascular decompression
http://www.upmc.com/patients-visitors/education/neurology/pages/und...

http://www.neurosurgery.pitt.edu/person/ray-sekula
http://www.neurosurgery.pitt.edu/

Video similar to this surgery:
http://www.youtube.com/watch?v=s7fUqg2aEkc

Gail C, please describe your symptoms and testing you have had done. Did you need a positive MRI to get a referral to UMPC? Thank you, Sharon



Granny said:

Gail C, who have you seen so far about your ear pain? I know you can call UMPC, but I also see they do want records and MRI's done. I do not have a definite dx for this yet, only told by a neurotologist to get EMG's done because my MRI's are inconclusive for the dx for TN or GN. I was told you can have a negative MRI, and an EMG can sometimes prove you have a problem with the cranial nerves.

I am very optimistic for you and if they are taking you without an MRI and simply listening to your symptom complaint, I hope they realize a negative MRI can happen. Please respond or certainly if you are very busy preparing for this trip I can understand if you can't post until after your visit on June 10th. Thank you, Sharon

Gail C said:

I have the same problems you all have described. I called UMPC and Dr. Horowitz is no longer there. But Dr Raymond Sekula is doing the same procedure. I called them last week, and I am scheduled to go there on Monday June 10, have an MRI and meet with Dr Sekula, if all looks like I need surgery, I am already on their surgery schedule for the next day. It's generally a 2 day hospital stay. I'll keep you posted on how my visit and hopefully surgery goes next week.

The surgery is called: Left retromastoid craniectomy with microvascular decompression
http://www.upmc.com/patients-visitors/education/neurology/pages/und...

http://www.neurosurgery.pitt.edu/person/ray-sekula
http://www.neurosurgery.pitt.edu/

Video similar to this surgery:
http://www.youtube.com/watch?v=s7fUqg2aEkc

Gail C, please describe your symptoms and testing you have had done. Did you need a positive MRI to get a referral to UMPC? Thank you, Sharon

I have been dealing with this for years. My neurologist in SC has prescribed me with every drug their is. It either didn't help or the side-effects were just to sever to handle. I saw Dr. Kim Burchiel in Oregon 4/2012 and he diagnosed me as Occipital Neuralgia and we tried a nerve stimulator which failed on every level; I had that removed; went back to Dr. Burchiel and he re-diagnosed me as geniculate neuralgia. He said he could do surgery, but didn't paint a very positive picture of what the outcome could be. Also the procedure he wanted to do was not to do decompression, just go straight the the internervus and sever the nerve. I wasn't very comfortable with the procedure he was suggesting and then found UPMC I just called them up and told them my history and they scheduled me for an MRI, visit with Dr. Sekula and put me on the books for surgery the following day, if I decided to go ahead with the surgery. I was scheduled to see him 10 days after my initial call. It has all happened very quickly. I'm flying in from SC and my Mom is joining me from Oregon. There is a Family House we can stay at which is right next to the hospital. If all goes well I get there on Sunday, get MRI and consult on Monday, Surgery (if that is what we decide) on Tuesday, discharge on Thursday, fly home on Friday. I'm nervous as hell, but the way it has all fallen into place, it feels like it is where I need to be. I had no problem getting insurance authorization (BC/BS & Medicare).

As far as my symptoms, I have a deep pain in my left ear.. like an ice pick deep down and then someone comes by for fun and wacks the pick to increase the pain. It burns all around my ear, food tastes funny, anything that raises my heart rate increase my pain; esp changes in weather.


Thank you Gail C for your info. I am seeing a pain doc about a SCS, now I am very skeptical, I was anyway....had one for just cervical pain in the 90's, not very effective and my PT told me they have not made any advances. Where were your leads placed? Last question as I know you are surely overwhelmed with this big trip ahead of you. I understand your fear of having a nerve cut, good luck to you, Sharon
Gail C said:

I have been dealing with this for years. My neurologist in SC has prescribed me with every drug their is. It either didn't help or the side-effects were just to sever to handle. I saw Dr. Kim Burchiel in Oregon 4/2012 and he diagnosed me as Occipital Neuralgia and we tried a nerve stimulator which failed on every level; I had that removed; went back to Dr. Burchiel and he re-diagnosed me as geniculate neuralgia. He said he could do surgery, but didn't paint a very positive picture of what the outcome could be. Also the procedure he wanted to do was not to do decompression, just go straight the the internervus and sever the nerve. I wasn't very comfortable with the procedure he was suggesting and then found UPMC I just called them up and told them my history and they scheduled me for an MRI, visit with Dr. Sekula and put me on the books for surgery the following day, if I decided to go ahead with the surgery. I was scheduled to see him 10 days after my initial call. It has all happened very quickly. I'm flying in from SC and my Mom is joining me from Oregon. There is a Family House we can stay at which is right next to the hospital. If all goes well I get there on Sunday, get MRI and consult on Monday, Surgery (if that is what we decide) on Tuesday, discharge on Thursday, fly home on Friday. I'm nervous as hell, but the way it has all fallen into place, it feels like it is where I need to be. I had no problem getting insurance authorization (BC/BS & Medicare).

As far as my symptoms, I have a deep pain in my left ear.. like an ice pick deep down and then someone comes by for fun and wacks the pick to increase the pain. It burns all around my ear, food tastes funny, anything that raises my heart rate increase my pain; esp changes in weather.

A lot of people found the stimulator to be a god send. For me when it was working, it did help, but not enough relief. Ended up being more trouble than benefit. I had to drive 200 miles RT to see a rep to reprogram it; it would be great for a week at best, but not helping. Turned out my leads were migrating. The only was to fix that is with surgery. I also suspect that the programmer shorted out and would also have to be replaced. Too many surgeries for me for the little relief I got. So I had it removed so I could try other options, such as nerve blocks and MRI's. The 1st one total bill was $42,000 - had difficulties with the insurance paying for it, claiming it was experimental, even though they had authorized in advanced and paid the doctors and hospitals, they then took the money back (ruthless!) Cost $22,00 to have it removed - insurance paid for that one. People with true ONS and migraines have definitely benefited, There is a group on Facebook that is most helpfulhttps://www.facebook.com/groups/232392623486874/ Occipital Nerve Stimulator... something like that.

Thanks Gail and the very best to you with your next attempt to be free of pain or at best we will take 50%, I will be looking forward to your post and post op results. Sharon



Gail C said:

A lot of people found the stimulator to be a god send. For me when it was working, it did help, but not enough relief. Ended up being more trouble than benefit. I had to drive 200 miles RT to see a rep to reprogram it; it would be great for a week at best, but not helping. Turned out my leads were migrating. The only was to fix that is with surgery. I also suspect that the programmer shorted out and would also have to be replaced. Too many surgeries for me for the little relief I got. So I had it removed so I could try other options, such as nerve blocks and MRI's. The 1st one total bill was $42,000 - had difficulties with the insurance paying for it, claiming it was experimental, even though they had authorized in advanced and paid the doctors and hospitals, they then took the money back (ruthless!) Cost $22,00 to have it removed - insurance paid for that one. People with true ONS and migraines have definitely benefited, There is a group on Facebook that is most helpfulhttps://www.facebook.com/groups/232392623486874/ Occipital Nerve Stimulator... something like that.