It’s easy to update when you have good news, it’s difficult when it’s not all good. Olivia has been struggling managing her pain. She was better, about down to a 4 or 5 after the surgery. Going down from a 10 that’s considered successful. There were days it was lower, and some higher, but she was probably averaging that for awhile. She could see her friends and do things but traditional school was too much. It’s a shame because she’s missing out on her freshman year in high school, and we were hoping the surgeries would get her back to school. Any day in the classroom made it shoot back up to anywhere between 8-10. She completed some credits online, but for the first time since this started in 7th grade, she is falling behind. Hoping to make it up next year with an alternative program.
Anyway, about 3 weeks ago she started feeling really bad pain again, back up to a 8 to 10, and on the level 10 days it was a 10+. We went to the ER this past Wed night, but they are usually at a loss because the entire regimen they have to go through for migraine is ineffective. She has Occipital Neuralgia, and the migraine meds do nothing for her.
I think that the surgeries were helpful in giving her a big reprieve from the pain, but it is an ongoing process. You cannot go into this expecting to be cured and be done with managing pain. I think the lucky few can do that, but I’m sure it’s not typical. This has been a lot for a 13 year old girl to deal with. If I could give any advice it would be to definitely seek some emotional support especially for a child, even if they don’t want it. She’s been very strong throughout all of this, but it’s taking it’s toll. She has an appointment with neuropsychologist coming up, I’m hoping he can help her manage the emotions that go along with chronic pain, I believe that is his specialty. It’s not fair, it can make one angry at the world when something like this happens. This monster has stolen her life away at such a young age, what could be an exciting time of life…it’s very difficult to deal with. For her and I both. I wish I had more time to devote to making her life better. She spends a lot of time alone. A support group of some sort is so important. There are several online groups that are a great way to learn about treatments, medications, and even make some friends and be reminded that you are not alone.
Additionally, make sure that you do have a good doctor at home either in pain management, a neurologist, or someone to help manage medications in addition to the surgery. Dr. Ducic always stressed that importance, and it is very true. If you wait until the pain is unbearable, it takes weeks to get into a good neuro. We do work with a really good pain clinic in our home town and they are good about getting her in pretty quickly. I’m getting her an appt there while we wait for the neuro appt. The pain clinic can give nerve blocks but they only last 2-3 days, and usually when the pain returns it comes back even worse for awhile so she really doesn’t want nerve blocks. We tried in the past to get Botox, but she could never be approved by my insurance because she was, and still is, under 16. I’m wondering if it would help her. I should probably start that paperwork to get approval and maybe we’d have it by the time she was 16…(8 months from now!) Maybe the neurologist can suggest a new medication, there may be something she hasn’t tried yet. Although she’s tried more than I can remember. In many cases, however, medications can work better after the surgery so it may be worth trying again.
Also considering seeing a neurosurgeon, and/or asking for a FIESTA MRI, a detailed MRI that show the pathologies of the cranial nerves. It’s obviously a nerve issue, she gets pain relief only from a nerve block, and the surgeries helped but didn’t last, so maybe there’s an issue with the nerves deeper down than what can be accessed peripherally. I don’t know but I’ll keep asking questions, and searching for an answer. There has to be something out there that will help her.
So, we still have some steps to follow, appointments to keep, and more research to do. In the meantime, We’ll be at least searching for something to bring some immediate pain relief as I’m hoping that she can enjoy some of the summer time. She is supposed to take drivers ed this summer…if you live in my town, please be on the look out :)
If anyone out there knows of any good headache clinics, especially in the Indiana = Michigan or mid-west area, please message me. Keep the faith and hoping you all have pain free days :)