Hi,
I’m hoping for any feedback that anyone can share.
Our daughter has been in CONSTANT pain for 29 months! We have been to over 15+ specialists here in Denver and she was even admitted to Children’s hospital for 5 days. We have been on a number of medications, but each time her body builds a tolerance and the meds stop being so effective in helping her pain. She has been on Tegretol, Carbamazepine, Amitriptyline, Gabapentin, Vicodin, oxycotin, etc. None have fully taken her pain away, but help her manage it so she can attend school, etc. We have also traveled to John’s Hopkins in Baltimore to see 2 neurosurgeons, Dr. Lim and Dr. Ahn. They had no diagnosis or treatment suggestions.
We just got back from Stanford in California and seeing a neurosurgeon there, Dr. Edwards. He feels we are dealing with Geniculate Neuralgia. He feels the only other treatment option for her would be surgery to section her nervus intermedius, in hopes that it will at least dull her pain if not stop it all together… He would team the surgery with another neurosurgeon from Stanford named Dr. Henderson.
I’m just wondering what experience, if any, does anyone have with this? It’s a big decision obviously when your child is 12 to make a permanent cut like that. But at this point she says she feels it will be worth it if there is any chance it could help her pain. She several time has said it hurts so bad she wishes she could cut her head off. So she can’t keep just living with this… She has completed 5th, 6th and 7th grade while dealing with this intense, non-stop pain.
Please share any experience or information you might have. I thank you in advance! I feel so helpless that I can’t help her more.
Also, see if you can get your hands on "Striking back" from the facial pain association / Amazon. It has a few useful tables on different options available - surgical and medical as well diagnostic definitions.
I’m so sorry for what your daughter is enduring. This is the Dr.that I will be seeing next for my glossopharyngeal neuralgia , maybe you can consult with him? He has great reviews, here is a video link of a 13 year old girl he helped with trigeminal neuralgia. His name is Dr. Mark Linskey
Best of luck,
Jill http://abc7.com/archive/9409468/
Have you tried acupuncture and homeopathic treatment? Might be worth a try before surgery.
Good luck
We were looking into acupuncture, etc and we were advised not to seek that route by a neurologist. With her being so young and nerve related, they said there was a realistic possibility that it could make her worse or possible permanent nerve damage. Thank you for your reply and suggestion! It is appreciated!
Also, see if you can get your hands on "Striking back" from the facial pain association / Amazon. It has a few useful tables on different options available - surgical and medical as well diagnostic definitions.
Hope this helps.
Smiley.
Smiley,
Thanks for those tips and that link. I’m so thankful to even find a little info about this. I appreciate it!
Andie
I'm so sorry for what your daughter is enduring. This is the Dr.that I will be seeing next for my glossopharyngeal neuralgia , maybe you can consult with him? He has great reviews, here is a video link of a 13 year old girl he helped with trigeminal neuralgia. His name is Dr. Mark Linskey Best of luck,
Jill http://abc7.com/archive/9409468/
Thank you Jill!
I’ve heard of Dr. Linskey and seen several vidos of people he’s helped with TN. I wasn’t sure if he has any experience with GN? I hope he has some answers and help for you! I appreciate you sharing the information! I feel like there is sooo little info out there and even less for kids with neuralgia issues.
Andie
I must admit I am not familiar with GN. I am 2 mouths post surgery from GPN. I had a MVD performed. Is this type of surgery done for GN? My surgeon is in Rhode Island he has handled a number of TN and GPN cases, not sure about GN.
His name is Curt Doberstein he works at Rhode Island Hospital.
I hope your child finds what she needs to make the pain end, I would say don't be afraid of surgery for me it was the only option.
Andy, GN is grouped in with the TN conditions in their groups. If you ask your question on those forums you may come across some other parents and kids who have faced similar issues. :)
I know you posted this a while ago but wanted to follow up. If your daughter has not had surgery (MVD) yet, then it is the belief of Dr. Linskey to try and preserve the nerve first before you section or cut because that is permanent. Another concern is your ear pain can actually be caused by more than the nervous intermedius. Ear pain can also be caused by the glossopharyngeal (9) and facial nerve (7) also. That is why if someone goes in and cuts the nervous intermedius, it doesn't always work because the culprit may be another nerve. I would recommend a consult with Dr. Linskey. I have throat and ear pain also and plan on getting MVD of the 5,7,9 and 10th nerve.
Dear Andie, how about your daughter now? Has she performed the surgery in sectioning nervus intermedius? Because our 10 y.o daughter also adviced by our neurosurgeon to do the same thing. Please any feedback will be very helpfull. Thanks
We have been on a number of medications, but each time her body builds a tolerance and the meds stop being so effective in helping her pain. 
Thank you for your reply and suggestion! It is appreciated! 