Hi Renee, I just read Gail C's response. Our experience was similar but different. Similar in that everyone at UPMC are just incredible and highly efficient. Different in that we didn't need to do a separate MRI at UPMC. We arrived two days prior to the scheduled surgery with Dr. Horowitz for the pre-op evaluations which included blood work, electrocardiogram, and hearing test. We could have the electrocardiogram before we flew out but didn't know that at the time. We stayed at the Marriott located up on the hill. I don't recall the exact name but they and several hotels give special rates to UPMC patients. Like the folks at UPMC the folks at Marriott were incredible. We stayed about a week and a half altogether. Flew in on a Mon. Pre-op stuff on Tue. Day off on Wed. Surgery on Thur. Staples removed the following Thur. Flew back to CA on Fri. Post-op at the hospital was a two-night stay. Note that are are several UPMC hospitals. The one we were at was Presbyterian. The head nurse who does all the scheduling is Lois. I don't recall her last name, but she makes everything happen. The only negative things about the whole thing was that we only spent a total of 5 minutes with the neurosurgeon Dr. Horowitz two days before the surgery. The entire GN diagnosis was by e-mail between me and Dr. Horowitz with me describing my wife's symptoms. He did followup with her GP before we scheduled surgery to confirm symptoms, but agreed from my e-mails and the one phone call with the GP that she had GN. No additional diagnosis at UPMC. The other thing was the discussion about risks, that really what Dr. Horowitz wanted meet us in person about was to go over risks and sign a waiver releasing him and UPMC from liability. The main risk of the MVD surgery for GN is some loss of hearing. We did not know that until two days before surgery. My wife was quite upset about that, but ultimately felt the risk was worthwhile if the surgery worked. She ended up with about 40% hearing loss right after surgery which improved over the next six months to be about 25% hearing loss. After a year and a half, she is still on some pretty heavy pain meds largely related to nerves that were severed during the surgery. These are nerves outside the head bone, so within the scalp. Nevertheless, she does continue to improve (recover) but recovery has been two steps forward one step back kind of thing. With the exception of that one five minute meeting with Dr Horowitz, everything about the experience was quite incredible in terms of our the UPMC as well as Marriott staff performed. Good luck!
Renee said:
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.
This information is amazing. I am very thankful that you took the time to write this for me. I truly appriciate it. I will keep you updated!
Gail C said:
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.
Steve, when did your wife have the surgery by Dr. Horowitz? Because when I went there in June 2013, things were in a bit of a turmoil as Dr. Horowitz had just left (he is now somewhere else in PA (? Erie). I think there was a bit of a political shuffle just prior to that where not everyone was happy with the changes. - but that's beside the point.
Both Horowitz and Skeula were trained or worked with Dr. Peter Jannetta - The founder (for lack of a better word) of the Jannetta Procedure aka MVD surgery.
Just one question - would your wife undergo the procedure again given the experience/information she has now? Obviously with a condition as debilitating as Geniculate Neuralgia, there is no cure and it is trading one set of symptoms for a whole different set of symptoms. Was it a fair trade? (ok that was 2 questions). Thank you for your wonderful story and give my best to your wife for being such a strong and courageous woman.
Renne, good luck with your upcoming and keep us posted! BTW which doctor are you seeing?
Steve, when did your wife have the surgery by Dr. Horowitz? Because when I went there in June 2013, things were in a bit of a turmoil as Dr. Horowitz had just left (he is now somewhere else in PA (? Erie). I think there was a bit of a political shuffle just prior to that where not everyone was happy with the changes. - but that's beside the point.
Both Horowitz and Skeula were trained or worked with Dr. Peter Jannetta - The founder (for lack of a better word) of the Jannetta Procedure aka MVD surgery.
Just one question - would your wife undergo the procedure again given the experience/information she has now? Obviously with a condition as debilitating as Geniculate Neuralgia, there is no cure and it is trading one set of symptoms for a whole different set of symptoms. Was it a fair trade? (ok that was 2 questions). Thank you for your wonderful story and give my best to your wife for being such a strong and courageous woman.
Renne, good luck with your upcoming and keep us posted! BTW which doctor are you seeing?
She had her surgery with Dr. Horowitz on Oct 18, 2012. He left UPMC three weeks later. We don't really know the degree of success yet. For the first year or so after surgery, she had not ear pain. As the surgical pain began to decline, she started going down on pain meds. About six months ago she started getting some ear pain again but not as intense nor or as long of duration, but definitely GN ear pain. She went back up slightly the meds trying to find the right balance. That's where she is right now. She currently has occasional ear pain that the meds don't completely eliminate. We really don't know at this time if the surgery did anything because its possible that the meds are masking the more server effects of the GN ear pain. We like to think the surgery did something. To ask my wife whether the surgery was worth it is an extremely emotionally charged question, though I like to think it must of done something.
Renee said:
Dr. Sekula ;)
Gail C said:
Steve, when did your wife have the surgery by Dr. Horowitz? Because when I went there in June 2013, things were in a bit of a turmoil as Dr. Horowitz had just left (he is now somewhere else in PA (? Erie). I think there was a bit of a political shuffle just prior to that where not everyone was happy with the changes. - but that's beside the point.
Both Horowitz and Skeula were trained or worked with Dr. Peter Jannetta - The founder (for lack of a better word) of the Jannetta Procedure aka MVD surgery.
Just one question - would your wife undergo the procedure again given the experience/information she has now? Obviously with a condition as debilitating as Geniculate Neuralgia, there is no cure and it is trading one set of symptoms for a whole different set of symptoms. Was it a fair trade? (ok that was 2 questions). Thank you for your wonderful story and give my best to your wife for being such a strong and courageous woman.
Renne, good luck with your upcoming and keep us posted! BTW which doctor are you seeing?