I have been dealing with GPN for 10 years now. I'm on week 4 of a recent "Flair Up" where I was hospitalized 2x because I couldn't take the pain any more (where the doctor prescribed Dilitan to "break the cycle" and it worked for a day or so). At the request of a friend I went to speak with a neurosurgeon. Even though the surgery he explained was "scary" It gave me some hope that I will no longer have to deal with this any more. And it is not just the pain, its the not knowing when it will rear it's ugly head. My daughter got married this past July and I was so concerned that I was going to have a flair up and not be able to attend, fortunately it did not flair. I have had to cancel vacations because of it. My family has been gravely concerned about me. Because of all this I have decided to go forward with the Surgery and will be having it next Wednesday, November 13, 2013 at the Brigham and Women's hospital in Boston, MA by a Dr. Edward Laws.
I will post on this site the outcome of the surgery and the recovery period. I would be interested in hearing from anyone else who has had this surgery and their story.
5 days post surgery and it appears to have been a success. Dr. Laws did find a cluster of blood vessels pressing up against my nerve and was able to untangle without damaging the nerve. I'm feeling a bit like I was hit by a truck but that is too be expected when you have surgery on the head/brain. Couple of side effects of the surgery is - dizziness, lost my voice and some challenges with swallowing. All of which according to doctors will correct itself in due time. What I can say for absolute sure is there are no signs of any GPN pain, and for that I am extremely grateful. I will continue to update my recovery.
According to my doctor the technicians could not see anything on the MRA, however he said he did see something. He was going to address this with the technicians.
I am 2.5 weeks post surgery. I am not experiencing any of my GPN symptoms and have not been on any medication (pain or otherwise since the surgery). My speech is showing slow signs of improvement as well as swallowing. I still move very slowly but I am making slow steady progress.
Today is 4 weeks post MVD surgery and no GPN symptoms and totally free of any medications! My voice is not 100% but it is good enough to communicate clearly and continues to show signs of improvement. My swallowing has continued to improve also. I have been able to introduce a variety of solid foods into my diet and as long as I take small bites and chew a lot followed by fluids I don't have any issues. I continue to see a speech therapist who gives me exercises to help strengthen my vocal cords and muscles in that area. I'm driving (although very selective as to time of day as my response time to react is not 100% yet) and I'm doing light house work. All of these things just help to bring back some normalcy into my life. I'm not back to work yet but except to go back within 4 weeks. I get tired easy, but I listen to my body and if it needs to rest I rest. I don't push myself beyond where I should and I think that and the support of my Husband and family has helped make my recovery that much smoother!
It is 7 weeks post MVD surgery and no GPN symptoms and no medications! I'm feeling really good. My voice is at about 90% and continues to improve daily. Swallowing has also improved immensely. I can swallow all foods but with some (very few) I do need to follow with liquids. I get tired more quickly than I used to but I also see that getting better every day. And I'm still listening to my body and resting when I need to.
I'm back to work on 1/6/13 and am hoping to get back into an exercise routine within the next 2-4 weeks.
Today is November 13, 2014 and it has been exactly 1 year since I had my MVD surgery for my GPN. I spent 10 years dealing with this pain and the pain seemed to get worse and more frequent as time passed. I was on medication daily (sometimes multiple times a day) just to try to minimize the flair-ups and nothing seemed to relieve the pain when I did have a flair up. Weill I am happy to say that I am pain free and have not had a flair up since my surgery. And I no longer take any medication for this condition!!! I did have some side effects after the surgery but in due time everything came back to normal. I know this type of surgery is scary and not for everyone but I am so glad I took the step and found good surgeons and hospital to have the procedure. I am very grateful!