My 10 year old daughter was recently diagnosed with Geniculate Neuralgia. She woke up on New Year's Day with an earache, but after 24 hours we knew something was wrong beyond an ear infection. After a week of trips to different doctors who all told us that her ears looked fine, her pediatrician suggested we see a neuralogist about Trigeminal Neuralgia.
She was admitted to the hospital for extreme pain and we stayed there for two days. They were unable to do anything to ease her pain other than Oxycodone which only really helped her drift into sleep. They completed a CT scan and MRI as well as had multiple individuals examine her including her surgeon from a vascular malformation resection that had been done years earlier. Their conclusion was probable TN and they started her on Tegretol.
We took her to her dentist to doubly rule out TMJ or anything related to her braces. He suggested that perhaps her wisdom teeth could be putting pressure on the nerves and referred us out to the Orofacial Pain clinic to a wonderful physician, Dr. Nixdorf, at the U of MN. He provided some recommendations for medication and partnered with her neurologist at the children's hospital and didn't think her pain quite fit TN.
During this time, I began pushing to have her be seen at the Mayo Clinic in Rochester, MN. We also continued to work with her neurologist to keep trying different medication combinations to see if we could touch her pain at all with no success. Her regimin to date has included various combinations and dosages of Tegretol XR, Neurontin, Dilantin, Clonidine, Propronalol, Amitriptyline.
In mid-February we were able to get her into the Mayo Clinic to see a pediatric neurologist and neurosurgeon there. Her diagnosis is Geniculate Neuralgia which much more closely fits her symptoms. She is still in constant pain that she relates as always at least a 9 on her pain scale and most of the time it's like being "punched in the head" on her right side with periodic "knives stabbing" on top of it. We're continuing to aggressively try to treat the pain with medications to exhaust all options (per the surgeon) prior to doing surgery, but I think that is the road we are heading down and quickly.
Lessons Learned so far:
- ALWAYS advocate. Keep copies of everything in triplicate and organized. One copy for yourself, one that is "copy-ready" (not stapled that you could hand someone so they can make copies of what they need during an appointment, and one copy that is just ready to be handed over. Do not be intimidated into not seeking additional opinions. You can still respect the phsycian you are working with while getting more information. Doctors should be willing to partner with each other to find the best possible care for the patient especially in the case of rare disorders.
- The book "Striking Back: The Trigeminal Neuralgia and Face Pain Handbook" has some great information in it, especially about medications. Even though my daughter doesn't have TN, GN is mentioned in the book as is GPN and it has been my go-to reference book as we work through medication management for her as the drugs seem to be very similar for the different neuralgias.
- Don't be afraid to ask friends/family for support. They genuinely want to help you and often just don't know how. We actually had to kindly request that people not ask our daughter directly how she's feeling as it increases her pain when she has to think about it to answer and then she feels bad if she lies and says "fine" when she doesn't feel that way or that she disappoints them when she doesn't respond that she's magically better. I dreaded asking her school for support, but they were genuinely very happy to help and we made reasonable accommodations to get her back into the classroom where the distractions help her manage the pain.
- Think outside of the box. We've engaged a psychologist for her to help with coping skills, chiropractic and acupuncture for complementary pain relief, aromatherapy, meditation, reiki. Being brave enough to try things others may scoff at may at least bring some secondary relief.
A Parent's Fears:
- I'm terrified that I won't be able to find a way to help her no longer be in pain.
- I'm scared that her personality will change and that she'll "shut down" because she can no longer handle coping with the pain especially as she goes into her teenage years.
- I'm frightened of the lack of information there is about treatment/surgical options. Even with the Chief of Neurosurgery from the Mayo Clinic on our side, it still seems like there's very few of these surgeries that have been performed and even fewer on children.
- I'm scared that I've somehow missed something obvious that either caused this and can be fixed or that could reduce her pain significantly.
- I'm concerned that if we move forward with surgery and something does go wrong that results in a lasting side effect that she will blame me for the rest of her life. It's a risk I'm willing to take as it's certainly nothing I could ever ask her if she wants to do because in the end we simply cannot ever set it up so that she ever has any reason to blame herself - EVER.
- I fear that I'm underestimating or overestimating her pain. I can't feel her pain myself. I simply know she hurts and I have to trust that. I have to trust a very subjective viewpoint of a child's pain to make incredibly hard decisions. I have to shove aside those doubts that creep up when people tell me "She looks fine" or "Wow. She's making it to school, she must be feeling better."
Questions:
- At what age did you start dealing with your condition? Is there anyone here who was under 18 or is a parent of a child suffering?
- Has anyone had surgical intervention that included transection of the nervus intermedius? What was the result? Any side effects? Any residual pain?
- If anyone is continuing to deal with GN has there been any relief from medication and if so, what combination?
- Any tips, tricks, lessons learned that I should add to my list as I'm just learning how to navigate this path?
Sorry for the novel out of the gate, but I think I've been storing it up in my head for a couple months.
Thank you.