Geniculate Neuralgia Story

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Gail and Granny,

Its been a while since I've been on. Mine is the original post at the top. What Gail described is exactly what my wife had experience, deep stabbing pain in the left ear. About a pain level of 13 which would cause her to pass. So, its been nearly 8 months now since her MVD surgery with Dr. Horowitz at UPMC. Three adverse effects occurred. (1) she has about 60% hearing loss in her left hear. She getting a hearing aid at the end of the month that insurance is mostly paying for; (2) she developed a fluid filled cyst just over the top of the titanium mesh just under the scalp; and (3) she developed a neuroma near the upper part of the incision. The cyst and neuroma developed a couple of months after surgery. She had second surgery by a local neurosurgeon in Feb to remove the cyst and the neuroma. She has been on a combination of Oxycontin, Oxycodone, Cymbalta, and Gabapentin every since the MVD surgery, but have been trying to wean her off the Oxycontin. She still has some pain from a swollen area where the cyst was and also some residual nerve pain above the incision. These two are related to the MVD surgery, not the geniculate neuralgia. Also,. she has had some instances of ear pain, but not as bad as before MVD. Sometimes the ear pain is the deep stabbing pain, now at a pain level of about 7 instead of 13, other times the ear pain is more of whooshyness, like the ocean in her ear. The most significant side effect is her impacts on her sleep habits. Apparently this a common side effect. This seems be a much bigger impact her quality of life than the residual pain or being on the drugs. Her GP is working to stabilize her sleep habits and other quality of life issues before knocking the Oxycontin down another step. However bad this sounds, it is a marked improvement of the deep stabbing ear pain she was having for nearly two years before the MVD surgery. Essentially, MVD is brain surgery. My wife's GP has emphasized several times that it sometimes takes a year or more to truly recover from brain surgery. Also, everything that I've been told is that everyone responds differently the surgery. I think my wife is probably near the average as I've hear more encouraging stories and others less encouraging. Nevertheless, there really aren't any other good solutions for geniculate neuralgia. I don't think there is any question that the UPMC is best choice for MVD surgery. Good luck to both or you.

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Santa Rosa Steve said:

Gail and Granny,

Its been a while since I've been on. Mine is the original post at the top. What Gail described is exactly what my wife had experience, deep stabbing pain in the left ear. About a pain level of 13 which would cause her to pass. So, its been nearly 8 months now since her MVD surgery with Dr. Horowitz at UPMC. Three adverse effects occurred. (1) she has about 60% hearing loss in her left hear. She getting a hearing aid at the end of the month that insurance is mostly paying for; (2) she developed a fluid filled cyst just over the top of the titanium mesh just under the scalp; and (3) she developed a neuroma near the upper part of the incision. The cyst and neuroma developed a couple of months after surgery. She had second surgery by a local neurosurgeon in Feb to remove the cyst and the neuroma. She has been on a combination of Oxycontin, Oxycodone, Cymbalta, and Gabapentin every since the MVD surgery, but have been trying to wean her off the Oxycontin. She still has some pain from a swollen area where the cyst was and also some residual nerve pain above the incision. These two are related to the MVD surgery, not the geniculate neuralgia. Also,. she has had some instances of ear pain, but not as bad as before MVD. Sometimes the ear pain is the deep stabbing pain, now at a pain level of about 7 instead of 13, other times the ear pain is more of whooshyness, like the ocean in her ear. The most significant side effect is her impacts on her sleep habits. Apparently this a common side effect. This seems be a much bigger impact her quality of life than the residual pain or being on the drugs. Her GP is working to stabilize her sleep habits and other quality of life issues before knocking the Oxycontin down another step. However bad this sounds, it is a marked improvement of the deep stabbing ear pain she was having for nearly two years before the MVD surgery. Essentially, MVD is brain surgery. My wife's GP has emphasized several times that it sometimes takes a year or more to truly recover from brain surgery. Also, everything that I've been told is that everyone responds differently the surgery. I think my wife is probably near the average as I've hear more encouraging stories and others less encouraging. Nevertheless, there really aren't any other good solutions for geniculate neuralgia. I don't think there is any question that the UPMC is best choice for MVD surgery. Good luck to both or you.

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Steve, thank you so much for the update of your wife's post-op experience. I don't like the idea of any of the side-effects you described; it seems no matter what I am going to be exchanging one problem with another and have to decide which is worse. I honestly don't know how much more of this pain I can continue with, I nearly lost it about 18 months ago when I took an overdose of medications just trying to get the pain to stop; but got a 2nd chance when I was revived in the ER. There is a reason why they call this the "suicide disease". I'm curious about what changes she has had with her sleep? Is she not sleeping? or sleeping to much? or up all night for days, then out for days? Currently, sleeping is the only time I get some relief from the pain so that is of great interest to me. Thank you again Steve. Gail

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Hi Gail. Yes, it is called suicide disease for good reasons. My wife mentioned it as an option several times before we actually got the diagnosis which was by e-mail with Dr. Horowitz who I found about this very web site. Believe me, the current side effects my wife has are far better than the previous intense stabbing ear pain. But, it is a long road. He sleep issues are largely inability to get to sleep. On a daily basis she sleeps about three times per day. From about 4 am till 7 am, then from about 8 am till 11 am, and then from about 2 pm to 4 pm. She almost never gets a straight 6 hrs of sleep, usually more like a straight 3 hrs, maybe 4 hrs if she's lucky. Our normal sleep habit is about 9:30 pm to 6 am which is what we've alway's done. She hasn't done that since she had the MVD surgery.

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Wow, I'm a person who likes her 8 hrs straight; I hopefully that doesn't happen to me. I've actually had good results with Melatonin - have you ever tried that? You can buy it over the counter. We had to switch to separate bedrooms a few years back since I'm up and down so much due to pain, that it was only fair or my boyfriend would have his sleep disrupted too. Thank you so much for the information.

I see Dr. Sekula on Monday after I get an MRI and then we will decide if I want to have the surgery which is tentatively scheduled for the following day. I have heard nothing but excellent things about UPMC and Dr. Sekula. I am so glad that is where I'm going. I also found out about UPMC on this site - might have even been your post about Dr. Horowitz that made me call, I was told he is no longer there, but Dr. Sekula is an amazing surgeon too. They got me set up right away to come out and see him. When things work out that easily, it helps make you feel that it's the right thing to do, I'll keep you posted.

Santa Rosa Steve said:

Hi Gail. Yes, it is called suicide disease for good reasons. My wife mentioned it as an option several times before we actually got the diagnosis which was by e-mail with Dr. Horowitz who I found about this very web site. Believe me, the current side effects my wife has are far better than the previous intense stabbing ear pain. But, it is a long road. He sleep issues are largely inability to get to sleep. On a daily basis she sleeps about three times per day. From about 4 am till 7 am, then from about 8 am till 11 am, and then from about 2 pm to 4 pm. She almost never gets a straight 6 hrs of sleep, usually more like a straight 3 hrs, maybe 4 hrs if she's lucky. Our normal sleep habit is about 9:30 pm to 6 am which is what we've alway's done. She hasn't done that since she had the MVD surgery.

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Santa Rosa Steve, Gail's suggestion to try melatonin to change a bad sleeping habit may help. I have been having a bad sleeping habit for over a year, since all my pain started. But I am doing better. I was waking at first at 5am, then 3am, then midnight after the time change. I can sleep 7 to 8 hours, I do wake 3 or 4 times but make myself stay in bed and go back to sleep. I was sleeping from 4pm to midnight. I was advised to take melatonin by my neuro's PA, she would not prescribe anything for sleep with the meds I am on. It has been 6 months since I started melatonin and sometimes I wake early but 4am, I have even slept to 7am. Melatonin takes some time to work, the dosage does not have to be the highest mg., I read the lower mg. works better. I know this is hard to do, but avoiding long naps in the day time got my sleep clock turned around. Try getting out of the house and doing an activity. I can truly understand sleep is the only time she is pain free, but being up all night and sleeping during the day is not a very good quality of life. I can now enjoy some evenings, I was afraid to drive when it was at it's worst, nearly fell asleep at the wheel. Thank you for your update on your wife, sorry for all the issues post op. Anytime a surgeon goes in and cuts there are risks. Glad they were able to resolve them. Sharon

Gail C said:

Wow, I'm a person who likes her 8 hrs straight; I hopefully that doesn't happen to me. I've actually had good results with Melatonin - have you ever tried that? You can buy it over the counter. We had to switch to separate bedrooms a few years back since I'm up and down so much due to pain, that it was only fair or my boyfriend would have his sleep disrupted too. Thank you so much for the information.

I see Dr. Sekula on Monday after I get an MRI and then we will decide if I want to have the surgery which is tentatively scheduled for the following day. I have heard nothing but excellent things about UPMC and Dr. Sekula. I am so glad that is where I'm going. I also found out about UPMC on this site - might have even been your post about Dr. Horowitz that made me call, I was told he is no longer there, but Dr. Sekula is an amazing surgeon too. They got me set up right away to come out and see him. When things work out that easily, it helps make you feel that it's the right thing to do, I'll keep you posted.

Santa Rosa Steve said:

Hi Gail. Yes, it is called suicide disease for good reasons. My wife mentioned it as an option several times before we actually got the diagnosis which was by e-mail with Dr. Horowitz who I found about this very web site. Believe me, the current side effects my wife has are far better than the previous intense stabbing ear pain. But, it is a long road. He sleep issues are largely inability to get to sleep. On a daily basis she sleeps about three times per day. From about 4 am till 7 am, then from about 8 am till 11 am, and then from about 2 pm to 4 pm. She almost never gets a straight 6 hrs of sleep, usually more like a straight 3 hrs, maybe 4 hrs if she's lucky. Our normal sleep habit is about 9:30 pm to 6 am which is what we've alway's done. She hasn't done that since she had the MVD surgery.

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Thank you all so much for this information! I hope everyone is having a pain-free or at least a lower than normal pain day.

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I have been writing this center and they respond immediately. Dr. Horowitz is no longer with them but another doctor has taken over. I am in Florida and if I ever decide to go anywhere for this it will be there. A compassionate caring nurse responded to my email. I need to figure out how to send films. Your story is very encouraging. Surgery is a big deal. So far my dx is mostly clinical. But I get the feeling they will listen and understand. Mixed results are not unfamiliar to me with surgery...I have had 13 plus surgeries of the lumbar, thoracic and cervical spine. Some improvement, some injury, so my expectations are realistic. Sharon

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Granny - The folks at UPMC, especially the support staff, including nurses, are really incredible. Its now been 10 1/2 months since my wife had her surgery. The stabbing ear pain is virtually gone. Every once in a while a 1 to 2 second stab, but its rare. She continues to have head pain related to the surgeries, the doctors believe its nerve pain from severing nerves between the scalp and the skull. Nerve block gabapentin seems to help most with that. She also continues to have sleep issues and feelings of exhaustion, but that could be related to the meds (besides the nerve block she has also been on Oxycontin for post surgery pain). According to all the doctors we have talked to, they all say the same thing, that recovery from brain surgery is not fast. It could easily take a year or more. It sometimes seems like its two steps forward and one step backwards. So, its frustrating. However, when we reflect on the geniculate neuralgia pain she suffered constantly for a year and a half, we realize that she in a much better place now even with the continuing head pain, sleep problems, etc. We are hopeful,that with time all that will go away.

Steve

Granny said:

I have been writing this center and they respond immediately. Dr. Horowitz is no longer with them but another doctor has taken over. I am in Florida and if I ever decide to go anywhere for this it will be there. A compassionate caring nurse responded to my email. I need to figure out how to send films. Your story is very encouraging. Surgery is a big deal. So far my dx is mostly clinical. But I get the feeling they will listen and understand. Mixed results are not unfamiliar to me with surgery...I have had 13 plus surgeries of the lumbar, thoracic and cervical spine. Some improvement, some injury, so my expectations are realistic. Sharon

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Dr. Paul Gardner performed my MVD at UPMC. I chose him over Dr. Horowitz for reasons best left unsaid. Dr. Gardner is an amazing neurosurgeon. Although everyone is different, my surgery has been 100 percent successful. I know of several others who have had Dr. Gardner perform their surgery and each was also successful. He performs several MVD's weekly and specializes in cranial based surgery. Good luck to you.


Granny said:

I have been writing this center and they respond immediately. Dr. Horowitz is no longer with them but another doctor has taken over. I am in Florida and if I ever decide to go anywhere for this it will be there. A compassionate caring nurse responded to my email. I need to figure out how to send films. Your story is very encouraging. Surgery is a big deal. So far my dx is mostly clinical. But I get the feeling they will listen and understand. Mixed results are not unfamiliar to me with surgery...I have had 13 plus surgeries of the lumbar, thoracic and cervical spine. Some improvement, some injury, so my expectations are realistic. Sharon

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Thank you for the encouragement. I am muddling along right now with an increase in my gabapentin and narcotics. I am beginning to notice an overwhelming feeling of doom and gloom, yak, depression from the gabapentin, doesn't last long, just when I first wake. It would be a big deal for me to entertain a trip there now that fall and winter are coming, I may have to wait until the spring. Sharon

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You are so right about surgery...like I could not put any weight on my right foot but I have been able to for years now, the surgery failed to correct a lumbar deformity but I can walk with a cane. I sustained a dropped right foot from one of surgeries, can't pull it up very much but I can push down, so I drive. At first I had no movement for months, took years to get back what I do have. I don't know if there is a trade off with some very disabling symptoms for other issues but time will tell and believe in healing. Our bodies can do amazing things on their own. I almost died on the table 2x going through a series of 3 surgeries, one was 14 hours, woke up on a ventilator 3x, lots of complications, bleed out, blood clot in my left leg and the dropped foot on the right. Then I came home and went right back in again in 5 days septic for another month. Took me 2 months to gain strength back just to get myself out of chair, well that was ages ago for me, I was 8 years younger, now I am 57.

My husband was a constant companion through all of this but died in '07. I had a difficult time learning to live on my own, my daughter and her husband were there for me. I had 3 hospitalizations for kidney failure from a dangerous interaction from meds and too much diurectic for swelling, I did almost die again, lost consciousness for days, near coma. So I keep coming back. I healed again and again. Now I have 3 beautiful grandchildren that I adore and they adore me. I don't understand why I am having to deal with all this cranial pain, this one is a real hard one, it won't let me rest, my back and legs feel 80% better after I elevate them within an hour. I went for 3 years without taking narcotics. Then this GN started 2 years ago.

I do understand how serious brain surgery is, a neurotologist was very specific about that with me but believed my pain.

You are a wonderful companion to your wife, your support I believe gives her more hope to tackle each day. Pain meds are warranted for disabling pain, but remember to have her doc give her some drug holidays to offset tolerance. Just cut the dose back as tolerated. I score my percocet down to 5 mg. some evenings from the 7.5 mg. if my pain is down. It allows the full dose to really work when the pain is 8 plus. One other suggestion for your wife's sleep issues. I was having a very bad sleep disorder. A low dose, 5 mg. of melatonin helped me. Just the lowest dose works, they do sell it at very high doses which I took and got nowhere until I researched it and found out the lower doses are more effective. No doctor would give me a sleeping pill with all the meds I am on but my neuro suggested this. Sharon

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Sharon,

While my wife was struggling with the ear pain, she was also on Cymbalta for both pain and depression. In her efforts to get off the meds post-surgery, she weaned off the Cymalta about 2 months ago. The withdrawls from going off Cymbalta were pretty brutal, not physical withdrawls, but emotional/mental in terms of mood swings and unfounded anger about all kinds of things. In terms of depression while she had the geniculate neuralgia, the Cymbalta probably did help some, though we don't think it helped with the pain.

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I found no benefit from cymbalta for pain, it made me suffer from confusion, not knowing what day of the week it was. I don't take anti-depressants for depression. I hope your wife has recovered from using cymbalta. I am wondering how old she is? Sometimes I think we get a placebo affect for depression but all the side effects and weening off are very undesirable. Sharon

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Thanks for your previous comments Sharon. My wife is 58. Agree with you on the possible placebo effects of depression meds.

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Too young...I read something funny, the 50 is the new 30, so is 60 the new 40? It is all in how you perceive your life...struggling is not fun, but overcoming a bad morning to have a better afternoon is how I cope or sometimes it is a better morning and not so good afternoon. I know I will have better days and those are the ones I get up for. I get up even if it is a bad day and try to do something, I try to swim, paint and I am my daughter's number 1 go to person to help her with the babies, she has two, 3 and 1 and is planning a 3rd, so a day with the grands is usually a good day. I get natural endorphins from their unconditional love they give me. When I was leaving yesterday afternoon my 1 year grandaughter came crawling quickly to the door to wave and give me throw kisses and was trying to say "I love you" back to me. I think on these moments and the fun I have with them, I do everything, change diapers, wipe runny noses and butts, feed and bath them, that is how they know they are loved by me, playtime is always going on. My 3 year old grandson wrestles with me. I am named "Granny" as in "Grannnnneeee!" Life goes on.

And if you can stay away from those anti-depressants, do, there are other ways to alter depression, a change of scenery, even if it is a different room will work. Thank you for your feedback, take care, Sharon

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This is wonderful to read. Yes, I know this is odd, but I'm so thankful to have found a group that understands.

I'm going to be asking for the MRI to fully diagnose that it is a blood vessel on my nervous intermedias. It is good to hear that the surgery is full on surgery, and not to be taken lightly.

It is good to hear that she's still happy she did it. (I'm not there yet, as meds are controlling it)

I'm hoping to outlast this, and get it fixed when it can be done easier.

Thank you for posting your wife's story and keeping us updated.

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I am new to the group, but have been reading your discussions for awhile now. I can't tell you how much hope and peace you have given me to just know that I am not alone, that my pain is real. To make a long story short, I had a 6 month episode of this in 2008 that was misdiagnosed and eventually resolved despite the treatments thrown at it. In 2011, it returned with a vengence and hasn't let up. I have been passed around to every doctor willing to see me, taken every med they threw at me, had nerve blocks and had a pulsed radio frequency ablation of the stellate ganglion without relief Your stories have helped me finally reach a diagnosis, and hopefully a solution. I have been in contact with the Doctors in Pittsburgh and will be considering my options soon. I am curious as to how your wife is doing now, does she still feel it was worth the complications, and do you have any suggestions to help prevent them?

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Good morning, I took everyones advice and made an appointment at UPMC, can you tell me what they did for you and who you saw there?

Santa Rosa Steve said:

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.

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UMPC / Dr. Sekula full Pittsburgh Story (from visit on 6/10/2013)

I live in South Carolina and My Mom (who lives in Portland, Oregon) and I (who lives in Greenwood, SC) flew in on 6/10/2013. We met up at the airport the day before my visit with Dr. Seluka. I was going there fully expecting to have surgery the following day. The only thing was that I had not had the specialized MRI that he likes done, as we didn't have an MRI that technical in the area I live. It was a 3D Fiesta with special cuts that Dr. Seluka prefers. So we had a full schedule the following morning.

First thing MRI, it took a while as the special cuts makes the MRI heat up and they have to stop for about 10 minutes a few times to let the MRI cool down. Then it was off for a hearing test, then blood work, then a special mapping on my skull done by his employees one I think was a medical student of intern. The mapping took almost an hour, with a lot of wires and goop all over my face and skull. But it was very detailed and gives him guiding markers to use during surgery so he doesn't mess up your hearing during surgery.

Finally at 4pm a mere 14 hours before I was scheduled to show up at the hospital for surgery I saw Dr. Raymond Sekula. He walked in and looked like he was going to cry. He said I'm sorry I can't do your surgery. With the way your anatomy is, I potentially could do more harm than good. I could destroy your hearing, and cause you more pain or paralysis and wouldn't feel comfortable taking those risks. He did give me the opportunity if I wanted to have him try anyway knowing the risks that he would do it. I said no I trust your judgment. He went on to spend an hour with my Mom and I explaining and drawing pictures on the exam room table paper cover. Gave me suggestions of other things I could try, such as Upper Cervical Chiropractor, go to Facial Pain Association (FPA) meetings in Florida and hook up with a lay-man who lives in Florida who has wonderful non-surgical option suggestions.

It was all very draining. He left my Mom and I in the room to let us cry and compose ourselves (as you can imagine it was overwhelming going from expecting to surgery in less than 14 hours to time to pack our bags and go home.) But they kindly let us sit in the exam room for as long as we wanted... no rush to clear the room. We took the shuttle back to the Family House (like a Ronald McDonald house), they have several scattered thru out the campus area with a shuttle bus coming by on a routine basis to and from the house and hospital. We got back to the room and decided we needed to get out of Pittsburgh as soon as possible. I got on the phone immediately with a SW Airline representative and she helped find us departing flights, mine to SC and Mom to Oregon that left about the same time so we could ride the Supper Shuttle to the airport together. On the shuttle it can take up to 2 hours to get to the airport as they may make many stops to pick up passengers along the way. Fortunately we were the only ones going at 4am to the airport for our 7am flights. We hugged, kissed, held hands and said goodbye as we both headed for our prospective gates at the airport. Fortunately we were both Flying Southwest so we left just gates away from each other.

Then I when I got home and had to tell everyone that had told I was having surgery before I left that I didn't have it done, it was so draining. Now 11 months later, I am happy I didn't have the surgery (God was with me that day). I have found a combination of medications and botox injections that keep me comfortable a good bit of the time.

I know this story was longer than you expected, but it might also help others heading out on their long-distance journeys. I totally respect Dr. Seluka and his Nurse Ann Wilkinson who did so much for me! I would recommend both of them in a heartbeat. The only thing I would have done differently was get that Fiesta 3D MRI done somewhere or made a separate trip to PA and have it done before I go expecting surgery. They were was trying to save me a trip an extra trip to PA, as over the phone and review of all my records & 2nd opinion by Dr. Kim Burchiel (Neurosurgeon and contributor to the book “Striking Back” in Portland Oregon indicated that I was a perfect candidate for the surgery. As a matter of fact, Dr. Burchiel had offered to do the surgery when I saw him 6 weeks earlier, but he wanted me to think about it for a while 1st and maybe get a 2nd opinion. I'm glad I listened to that advice. Dr. Burchiel is the one who 9 months earlier had implanted my nerve stimulator which failed on many levels (migrated out of position quickly, had to be reprogramed countless times then finally shorted out). I had it removed by a Neurosurgeon in South Carolina.

I hope your visit at UMPC goes exactly the way God intends it to be. Listen to that little voice in your head if you have any doubts allow yourself time to think about it. Remember once the surgery is done there is no undoing it and you get the cards you are dealt with. My prayers and thoughts will be with you and your family as well as with the doctor you see at UMPC.

Gail