Hello friends. I have not been on the forum for awhile, as I have been working freelance jobs whenever I don't feel like screaming in pain- which isn't often, and I have been running a fundraiser, as that is the only way I can possibly have enough money simply to get to my next surgery and give my sister-in-law, who is a medical expert, a place to stay during my upcoming 7 day hospital stay. I've missed you all and think of those of you that have written me often. Even if I have not responded I am grateful for your kind emails. The only reason I have not written is that I have such a small window of time each day to get too many things done before the Geniculate Neuralgia pain in my right ear sends me crying to bed.
As I've posted before I had an MVD surgery done in Tucson, AZ a year ago last year but it was a complete failure. It took some time to get back on my own two feet, without the use of a walker, and along with the sharp increase in pain I am absolutely drained and exhausted every day now. It took me awhile, but I finally contacted several folks on this forum who had great things to say about UPMC (Pittsburgh). There is no way I can afford to get there as I live and support my family on my disability money, so I have been running an online crowdfunding-type fundraiser, and have been amazed by the support of people who only know I hurt constantly, even if they don't understand why. Although I don't have quite enough raised or saved- working odd freelance jobs in the moments I don't feel like weeping in pain, which is rare, I am now officially scheduled for surgery with Dr. Gardner at UPMC Presbyterian at the end of September.
I would love to hear from any of you who have had surgeries done at UPMC, with Dr. Gardner or any other neurosurgeons there. During my surgery last year, which was supposed to be an MVD, I was told that the doctor did not see any nerves pressing on blood vessels, therefore none of my nerves were wrapped in the, what I imagine, little straightjackets to stop causing trouble. (I have to have some humor about it, otherwise the fact that I've been in constant pain for three years- the entire time my youngest daughter has been alive, is simply too depressing to bear.) It's still a struggle not to fall into severe depression.
I am told that if Dr. Gardner sees any decompressed (or is it compressed? My memory is worthless since last year's surgery) he will wrap the nerve, but the primary reason I am heading there is to have my nervus intermedius cut. I have spoken to the nurse for the neurosurgery team there several times, and she has provided me with fantastic information that relieved a lot of my fear. I had heard many scary things about cutting the nerve, and why it was an absolute last choice.
The other many questions I have are if any of you that have or had Geniculate Neuralgia and you had your nervus intermedius cut, did you suffer any temporary or long-term adverse side effects? Did any of you have this surgery done and have substantial pain relief? Has anyone stayed at the Family Houses UPMC runs for out-of-state travelers, and how did you get around? I know there is a shuttle that goes to and from the Family Houses and UPMC, but what would you recommend for getting to and from the airport to one of the Family Houses? I was told there is a waiting list for the Family Houses- were any of you unable to stay there due to a lack of available rooms, and if so, do you have suggestions for cheap, but not dirty hotels or motels nearby? Another big worry I have, for any of you that had any procedures done for neuralgia and then had a long flight home- how did you do? Were you in more pain due to the changes in air pressure? Last but not least, what is the weather like at the end of September in Pittsburgh?
My sister-in-law will be my medical escort- she volunteered immediately, thank goodness. Much as I would like my husband to be there with me, we have two young children, and it's just impossible to sort out him coming with me when we have no family members offering to babysit the girls for the 9 days I'll be away.
Thank you ahead of time for reading this and for answering any of my questions. I started a blog primarily just to have a place to talk about this disorder and how it has affected my life and the lives of my family members. I work when I can, making $2 an hour to monitor people's ebay ads. At this point anything helps. The neurosurgeon team at UPMC know more about Geneticulate Neuralgia than any other neurosurgeons I've contacted, and though I can't quite afford the trip I have to make it happen. If any of you can answer any of my questions based on your own or a loved one's experiences, I would be incredibly grateful. I am not very active on the forum simply because I am always so far behind on my mandatory to-do list each day, but I hope all of you that have had recent surgeries are doing well. Thank you for writing even when I hurt too badly to respond. Have a good day, dear friends.