Can not believe I just wrote a title like that. Can't believe any of this some days.
I am new, obviously, and searching for any other story anywhere near similar to my daughter's. I can be long-winded so pop some pop corn and sit back. This could take a while...
My husband and I met at 19 in Maryland...he ended up a naval officer, me: an at-home mom. 20+ yrs later, he works for a great company outside of Seattle while I get to volunteer at school and in the community. We've lived in 11 states over that period of time, owned 13 cars (and one Harley), traveled, had two Pekingese, and two AMAZINGLY cool kids. Our son is 16 and daughter 13. They are "A" students, mature, loving, and talented. The kind of kids you dream of having. Truly, we've been BEYOND lucky.
Nov.1, 2010, Lynn, our daughter was laid up for a month with what seemed to be a migraine. She'd never been sick before really. A little dizziness for a few days but then just HORRIBLE pain. Eventually, though it passed.
On Feb. 14, 2010, it returned and she has had the headache since. Again, when it's at a 10/10 pain, there's dizziness and weakness but mostly, it's just pain, pain, pain.
March 2010 an MRI showed an 11mm Chairi without any cerebral or spinal fluid issue. Since her headache is 24/7 and usually is not in the back of the head near the neck, the NS didn't think the Chairi was the problem.
Since the first episode in Nov. 2010, she has been on a number of meds for pain (all make her high and don't work). Done the Torodol injection and took Imitrex upon onset in Feb. 2010. She's taken a fibromyalgia med and stuff in the different groups they use for migraine. She's done a B2, chelated mag/calcium, CO Q something routine and many tried all the OTC's. Docs have looked at her diet (which is great since we're all a bit nutty about our food here) and have run panels for food allergies, iron, vits and minerals, electrolytes, etc,...She went to and endocrinologist who took 8 vials of blood and came up with nothing (she tried though!). Put her on estrogen just in case...maybe...off chance it would help with the head. It has not.
They looked for infection and cancer in blood and bones believe it or not.
There was Biofeedback over the course of a few months and it was nice but Lynn is really great about relaxing and appreciating life, yoga, stretching,...learned some stuff there though. Plus she's been to a psychologist outside of and one at Children's Hosp. Both say she seems nowhere near depressed or anxious and try as they might, they couldn't uncover any deep, dark whatever. HER HEAD IS HER PROBLEM. Oh yeah, there was massage and cranial sacral massage. Neurologists can not find any issues beyond the Chairi. She's tried mixing meds and therapies...doing one at a time...doing none...and listened to all the tips (stick with a rigid sleep schedule, drink an absurd amount of water daily, etc,....)
She has been on NO meds for 6 months-not even OTC. They don't work. She takes flax, vit D and some calcium now.
So, it's time for the follow up with the NS. He'll say she can have the surgery but she does not present like most Chairi patients do...the pain is not the right type from the right place at all the right times. In no way do I want her to have this surgery done needlessly but nothing else helps at all, ever, not in the least bit. She's out of options besides "living with it."
Some weeks though, she is barely living. Some weeks, it takes everything she has to get to school and do her homework. Some weeks she forgoes friends and fun, misses practices and games, language lessons, hiking and biking, time with family...all of the things she loves. You know...the things that make life worth living.
Other weeks, when the pain is "better" (about 7 out of 10), she participates in everything. She tries very hard to keep trying and wants to be well.
Whether it's a time when she's trying hard for normalcy or just a school-pain-homework-pain-sleep type of week, she's suffering 24/7 and being robbed of the full life she wants back.
A for the surgery...I think we've been thorough. No one can find anything at all wrong with her. ONLY CM which leaves her with no option that I can see besides this current state of living with it and it's not living.
HAS ANYBODY ELSE HAD THE "WRONG" SYMPTOMS AND HAD SURGERY TO CORRECT CM ANYWAY? DID IT EASE THE PAIN EVENTUALLY?
I can not believe nothing else helped and it's come to this.
Oh yeah-the Botox...Lynn is meeting with a new doc to look into it. Maybe it'll help but if not, we're back to having to decide if she should have surgery.
Thanks for listening. :)608-IMG_0014.JPG (1.19 MB)