Hi my name is Tina, I have suffered for almost 2 years with this GPN nerve pain. I moved to Raleigh last year went to doctors and dentist trying to find out what the pain was coming from. Finally, had a mri from my wonderful neurologist and the GPN was confirmed. Went to the pain clinic to see if nerve blocks were a solution for pain control and scheduled for me to have it done and made a referrel to Dr. Fukishima. Not realizing he is one of the best neurosurgeon's in the world. Went to Dr. Fukishima ( which his office is 2 miles from my house, what a blessing!) He told me not to have the nerve block and he told me I needed the decompression surgery. He prescribed me tegretol for the the pain, but I had bad side effects from the medicine. So I'm taking Keppra and gabbapentin which seem to work ok. Also taking pain medication to control pain as well. The surgery is Oct. 23 and I am so ready for this that its my only hope. By my research, I could not have had a better doctor than Dr. Fukishima. I will keep you posted on my outcomes. Any Suggestions you may have is appreciative. I love this forum, to know that I'm not alone with this condition. Let me know if you have any questions for me also.
Best of luck to you, Tina. You'll be in my prayers. I hope this surgery will be the help you've been waiting for.
Can you tell me if either of your parents or grandparents had this or any of the other types of neuralgia? I'm curious about the possibility that it's inherited.
Good luck Tina!!! Everyone with this should have the surgery, unless for some reason they can’t. I am 3 weeks post-op and feel awesome!
Im getting MVD Oct 24th, do the meds really work for you?
Pamcliff, I do not know much about my family history...I know my mother and father are very healthy individuals and have never had any health issues. I'm the only one in my family thats ever had this problem. Thank you so much for thinking of me and for your prayers.
pamcliff said:
Best of luck to you, Tina. You'll be in my prayers. I hope this surgery will be the help you've been waiting for.
Can you tell me if either of your parents or grandparents had this or any of the other types of neuralgia? I'm curious about the possibility that it's inherited.
No, I've been switching meds for the last year. The gabapentin 1200mg 3 times a day seemed to help better than Lyrica. I tried Lyrica and it made the pain worse. The surgery at this point is my only solution. The prescription pain medication from the pain clinic has helped keep the pain at a threshold. Zomig, used to treat migraines, is a quick fix for my pain control when its severe, but the meds will only last 24 hrs. The doctors don't like me using the Zomig alot because it can cause rebound headaches...but when the severe pain won't go away...then I take one.
Deleone said:
Im getting MVD Oct 24th, do the meds really work for you?
Laura, thats so awesome! So happy for you, I'm looking forward to hoping to be pain free. Is there anything I should know to expect after the surgery? I'm also very grateful to have been blessed by having Dr. Fukishima do my surgery!
Laura said:
Good luck Tina!!! Everyone with this should have the surgery, unless for some reason they can't. I am 3 weeks post-op and feel awesome!
How were you diagnosed with this verses Eagle's syndrome?
tinabh said:
Laura, thats so awesome! So happy for you, I'm looking forward to hoping to be pain free. Is there anything I should know to expect after the surgery? I'm also very grateful to have been blessed by having Dr. Fukishima do my surgery!
Laura said:Good luck Tina!!! Everyone with this should have the surgery, unless for some reason they can't. I am 3 weeks post-op and feel awesome!
I've never heard of Eagle's syndrome, but I will look it up. I just told the neurologist about my symptoms. Over a 6 month period of time was having trouble with managing the pain so he recommended me seeing the pain specialist and thats how I got referred to the neurosurgeon. The MRI showed the GPN and he stated the surgery was my only option to be pain free.
er said:
How were you diagnosed with this verses Eagle's syndrome?
tinabh said:
I've never heard of Eagle's syndrome, but I will look it up. I just told the neurologist about my symptoms. Over a 6 month period of time was having trouble with managing the pain so he recommended me seeing the pain specialist and thats how I got referred to the neurosurgeon. The MRI showed the GPN and he stated the surgery was my only option to be pain free.
er said:How were you diagnosed with this verses Eagle's syndrome?
May I ask what your symptoms are?
Good luck, Tina. I am following you on the 25th.
Is Dr Fukishima at Duke Med. Center in Durham? Can you give me contact info? I live in NC but had a bad experience with a neurologist at Duke several years ago. He acted like I was taking up his valuable time and, more or less, accused me of being hypochondriac...said I had "phantom" pain. He was a German fellow and I can't remember his name. I didn't have much respect for him after that.
Good Luck with your surgery--keep us posted.
Thanks,
Bill
He is with the Carolina Neuroscience Institute which is located in Raleigh. He actually is doing my surgery at Duke Raleigh Hospital. I was referred there from the pain clinic. He travels throughout the country so he is there only at specific times. If you can get a referral to see him, he is the guy. Its hard to know what he says sometimes because he speaks some in Japanese, but Is very confident in this field. Google the Carolina Neuroscience Institute lots of info there.
Dr. Fukushima is on the consulting faculty as a Consulting Professor of Surgery. Here is his Duke listing:
http://neuro.surgery.duke.edu/faculty/faculty-details/takanori-fukushima-md
Thanks heaps to tianbh and Vicdoc.
I thought I was the only one on earth that had this problem before I found you guys.
Aww thanks! I thought the same thing.
When I tried to find out more about this condition 6 years ago, there wasn't much out there. I'm glad there is a forum we can get together. It is rare, but in many cases it is curable.
Praying for a complete healing and strength for you Tina! Be strong!