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Prayers for my daughter

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cantbelieve posted 9/3/2013 12:43 PM

She has been having headaches and vision problems since June. An MRI showed she has Chiari Malformation. The base of the brain is pushing down because her skull isn't large enough. The neurologist really didn't think that was the problem because she has never shown symptoms of this during her 19 years. Her regular dr. sent her to an ENT and they discovered a condition in her inner ear (called ear rocks) that have moved and is causing dizziness.

So she heads off to school and isn't getting better so goes to another ENT and he has referred her as an emergency patient to a neurosurgeon.

If she ends up needing surgery, she will have to drop out of this semester. She is very directed in wanting to go to Physical Therapy school and next year studying in London.

She calls me crying and I'm trying to calm her while I'm a nervous wreck.

We are waiting for the neurosurgeon to call so I can get up there and try and figure out what is going on.

Please send prayers we figure this out and she won't need surgery.

lieshurt posted 9/3/2013 13:11 PM

Sending prayers for you both. (((hugs)))

jo2love posted 9/3/2013 13:23 PM

(((cant & DD)))

Sending prayers and good thoughts.

DeadMumWalking posted 9/3/2013 13:45 PM

((((cant & DD))))

Sending strength and positive thoughts your way.

As for the 'ear rocks': I have had this a few times, there are some techniques she can try at home to try to move them from the inner ear (where they are causing the problems).

The first time I had it, I had no idea what was happening to me. I was stuck in bed for almost a week because I was unable to sit up or even turn over out of one comfortable position. Then my boss told me his wife had it for 3 months and explained the movement to try to get them moved. When I had it again after that, I tried the moves and it has gone away pretty quickly after that.

Google BPPV treatment (abbreviation of the technical name) and you will find explanations and even youtube videos of the moves. If she is lucky, she might get some relief. She might also ask for an anti-vertigo medication to take as well, it could help to make the condition more tolerable until it goes away.

((((cant & DD))))

5454real posted 9/3/2013 13:53 PM

Prayers sent

Jrazz posted 9/3/2013 13:57 PM

Sending prayers for your daughter and family.

Faithful w/Love posted 9/3/2013 14:12 PM

Sending prayers!

tushnurse posted 9/3/2013 14:23 PM

If she has "ear rocks" they can indeed be causing her problems, and she needs "Vestibular training" this is a method where they essentially use centrifical force to get them back where they belong.

A WORD OF WARNING: A Chiari Malformation can cause issues, but please make sure you see a neurologist, and a neurosurgeon that are trained in dealing with it. I have seen multiple patients hang their hat on resolution of their problems, by having the surgery to fix it, to only end up a bigger mess in the end.
Most people with Chiari, don't even know they have it, and it goes a lifetime without being diagnosed. Meaning it is just that a malformation, that is generally benign.
If she has been doing a lot more reading and studying this will impact her vision, and can make it suddenly worsen, or develop astigmatism. If she is under the stress of going away to school for the first time, and is having a tough time with everything she may just be having stress headaches.

I am sending up prayers that she just has simple things going on. But please please please do not let her have surgery without a second opinion, and seeing both neurologist, and neurosurgeon.

(((((and strength))))

Jennifer99 posted 9/3/2013 14:26 PM

I know how much it sucks to have health issues interfere with your dreams.

I'll be thinking of her hoping she gets some good news.

BUT - I learned a lot by not getting to take a straight road to my goals too so hopefully if things don't go as planned she finds some silver lining.

Hugs to you for being there for her.

authenticnow posted 9/3/2013 14:29 PM

Sending good thoughts and prayers for your daughter.

homewrecked2011 posted 9/3/2013 14:51 PM

You are lucky you are in TX there are so many awesome surgeons there!

My friends 6 year old had this surgery in Greenville, SC. He's making a great recovery.

This month is Chiari Awareness month, so you may be able to get in touch with the assoc and see if they can recommend a neurosurgeon in your area.

cantbelieve posted 9/3/2013 14:57 PM

She's had the Eply Maneuver and she seemed to think it helped a little.

Believe, me, I will not jump into anything. 2 dr. don't believe this is related to Chiari. She will see this neurosurgeon in Fayetteville AR and then depending upon his diagnosis, there are a couple of doctors in Dallas that I will get opinions.

I just feel so bad that I'm not there with her and she is about ready to just come home.

Prayers, prayers, prayers....

cantbelieve posted 9/3/2013 16:25 PM

Mama bear can't stand it. On my way to Fayetteville.

still2suspicious posted 9/3/2013 17:15 PM

Have a safe trip cb.

Sending prayers.

osxgirl posted 9/3/2013 17:18 PM

Another thing - has she had her eyes checked? Not by an optometrist, but by an ophthalmologist. She should probably have a complete eye exam.

The reason I say this - I have/had (never know which to say for this) something that used to be called pseudotumor cerebri. They now call it Ideopathic Intercranial Hypertension (IIH). It is basically that the optic nerves swell. They don't really know the reason why.

Most of the time, the symptom that someone with this notices is a change in vision. But not always - it can happen with no change in vision.

The reason I bring this up: it's something that a lot of doctor's don't seem to know about, and from my reading about it, it can CAUSE chiari malformation.

It was diagnosed by my ophthalmalogist, and I had to see a neurologist and an ophthalneurologist after I was diagnosed.

I don't know - maybe they've already checked for that. But I just thought I would mention it in case...

ETA: In my case, the first thing they tried was putting me on diamox. It worked for me. It doesn't always. So far, it hasn't come back.. I was lucky, though, and got it diagnosed even though I was not having symptoms, so I probably caught it early. I was in all the risk categories, and my mom had it, so she kept bugging me to get my eyes checked. I told the eye doctor why I was getting them checked, and she was kind of shocked when she told me that yes, I did have it. It's kind of rare, and catching it like that without any symptoms is REALLY rare.

Good luck, and I will keep her and you in my prayers.

[This message edited by osxgirl at 5:25 PM, September 3rd (Tuesday)]

Kajem posted 9/3/2013 18:25 PM

Prayers being sent , safe travels.

kernel posted 9/3/2013 19:49 PM

Sending positive thoughts and mojo! (((cb and DD))

cantbelieve posted 9/6/2013 08:08 AM

Thank you for all your prayers and positive thoughts. Due to the fact that you don't want to rush into any kind of surgery, the neurosurgeon wants to do other testing to confirm, if in fact, Chiari is the cause. Instead of trying to schedule dr. visits between classes, she has decided to take a medical leave for this semester and come home, get all the tests done and if she needs surgery to get it done early enough so she can get back next semester.

We both cried, but decided it would be better for her to be home and we will tackle this together.

The dizziness from the "ear rocks" is getting better, but whenever she changes position quickly, she gets tunnel vision.

Thanks osxgirl for your suggestion. I never thought of that.

cantbelieve posted 10/31/2013 11:26 AM

Update on my daughter.

She still has headaches, tunnel vision and dizziness. The Neurosurgeon didn't think this is related to Chiari, MRI & CT didn't show high pressure in brain. Today we saw another neurologist (headache specialist) and he doesn't think it's Chiari either (which hopefully means no surgery). We will have another MRI to see if the pressure is too low. He mentioned basilar migraine that goes under her brain instead of on top. Her BP was low, so now we will see a cardiologist to rule out anything, but since she played competitive soccer for 8 years, he just thinks she's in great shape. Tomorrow we see a neuro-ophthamologist to rule out anything there.

Need mojo that we find the issue so she can go back to school for spring semester and be able to study abroad next year in England.

lieshurt posted 10/31/2013 12:06 PM

Sending lots and lots of mojo your way.

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