Desperate times

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 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.


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. :)

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Hi Gma7938,

Wow...It really sounds like your daughter & family have been through so much. You have definitely come to the right place. This is a very special discussion group. We are all either Chiarians or loved ones of Chiarians. First let me say...All your daughter's symptoms are CM symptoms. I am not sure why your NS said he didn't think CM was causing her problems. Is it possible for you to get a second opinion? There are no "Wrong " symptoms for CM. Not every CM patient has the same symptoms. Most NL, or NS are not experienced enough to diagnosis or treat CM. You daughter seems to have tried multiple therapies for multiple diagnoses & nothing has worked. What type of doctor is your new doctor? You realy need to find a CM Specialist in your area and follow up with them. We usually ask the doctor how many CM patients have you treated & A good # is 100 or more. We have a list on this site of good NS, or we have members all over the world & can assist you in finding a experienced NS. Your daughter is very young and everything I have read states that if you have Decompression surgery for a CM your recovery & post surgical symptoms are better the younger your age is. Please ask us any questions you might have. I hope what I have told you has helped some.

Tracy Z.

I wish I had something perfect to tell you. Tracy is right about the fact that your daughter is young and she should have an easier time with recovery. Under no circumstances though should she or you think that it will be easy. It still will be a new road to with speed bumps and pot holes. She has been through so much already and nothing else was found. I do suggest the same thing as Tracy.. Make sure that NS has done his fair share of Decompression surgeries. If he hasn't find one that has.

Please know that we will be here for you, to laugh with, cry with, scream with or just vent. It's a lot to handle and take in. I'm not sure how I would do it if it was my daughter with the Chiari and not me. You're a strong Momma Bear. Bless You

Here are two names in WA that other Chiari patients have recommended. I do not know them or have ever met them. We do know that they specialize in Chiari Malformation

Dr. Robert Rostomily University of Washington Medical Center Department of Neurological Surgery 1959 NE Pacific, Box 356470 Seattle, Washington 98195

Dr. Richard G. Ellenbogen

Neurological Surgery Children's Hospital and Regional Medical Center
4800 Snad Point Way N.E. P.O. Box 5371 Seattle 98105-0371 (ph) 206.526.2544

hugs, that's all I got, hugs. I really hope as one mother to another that you are able to find answers. I am knew to this whole Chiari thing so I don't have anything to offer other than hugs.

agreed...second opinion sounds like it may be worth looking into. I cant tell you how many doctors we saw that could not even pronounce Chiari. It is frustrating but when you are in front of someone who knows, you will know. God Bless. Lonnie and Junie

Thanks for the nice thoughts and info. KEEP IT COMING! I am going to show my daughter this site today. She is too young to choose surgery on her own BUT TOO OLD for her dad and I to decide for her. Kind of an odd position to be in, especially when the NS (Dr. Ellenbogen, Seattle Children's) isn't more confident the decompression will be helpful. I added some recent photos of us too...son and husband both being goofy and trying to keep it all as "normal" as possible.

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