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User Topic: Prayers for my daughter
cantbelieve
Member
Member # 22028
Default  Posted: 12:43 PM, September 3rd (Tuesday)

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.


Me: BS (58)
Him: WS (58)
LTA 4 years with co-worker
DS(26)
DD(23)
DD(20)
Married 29 years
D-day1 5/08
D-day2 11/08
Status: 6 yrs and wondering if I'll ever be truly happy again

Posts: 1061 | Registered: Dec 2008 | From: DFW
lieshurt
Member
Member # 14003
Default  Posted: 1:11 PM, September 3rd (Tuesday)

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


I'm sorry if you don't like my Honesty, but to be fair I don't like your lies.

Sometimes it's better to push someone away...not because you stopped loving them but because you can't take the pain anymore.


Posts: 13724 | Registered: Mar 2007 | From: Houston
jo2love
Moderator
Member # 31528
Default  Posted: 1:23 PM, September 3rd (Tuesday)

(((cant & DD)))

Sending prayers and good thoughts.


Posts: 34743 | Registered: Mar 2011
DeadMumWalking
Member
Member # 25341
Default  Posted: 1:45 PM, September 3rd (Tuesday)

((((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))))


Me (BS), Him (WH): early 50's
3 DS: teens!!! :)
M: 24 (19 1/2 at Dday), Together 29
Dday: Dec 2008
re-separated (in-house), for good (??) <-- should really remove these, shouldn't I...

Posts: 2548 | Registered: Aug 2009 | From: EU
5454real
Member
Member # 37455
Default  Posted: 1:53 PM, September 3rd (Tuesday)

Prayers sent


BH 51, WW 42
DS 23(Mine),SD 21,SS 20(Hers),DS 9 Ours, DGS 3, DGD 1 mo
D=Day #1 5/04EA (Rugswept)
D-Day #2 3/10/12, TT til 3/13/12
Married 10yrs
I have no love for a friend who loves in words alone.
― Sophocles, Antigone

Posts: 2726 | Registered: Nov 2012 | From: midwest
Jrazz
Guide
Member # 31349
Default  Posted: 1:57 PM, September 3rd (Tuesday)

Sending prayers for your daughter and family.


It is better to be slapped with the truth than kissed with a lie. -Russian Proverb

Posts: 17067 | Registered: Feb 2011 | From: California
Faithful w/Love
Member
Member # 33128
Default  Posted: 2:12 PM, September 3rd (Tuesday)

Sending prayers!


BS(ME)40 WH(HIM)38
DD 19 and DS 15
Separated Aug 2012
Moved back home Oct 31 2013
False R. Still Lying.
Will be divorcing soon!
"You never know how strong you are until being strong is the only choice you have"!

Posts: 2661 | Registered: Aug 2011
tushnurse
Member
Member # 21101
Default  Posted: 2:23 PM, September 3rd (Tuesday)

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))))


Me: FBS
Him: FWS
Kids: 15 & 17
Married for 22 years now, was 16 at the time. .
D-Day Sept 26 2008
Fully R'd, and Happy Happy Happy

Posts: 8229 | Registered: Oct 2008 | From: St. Louis
Jennifer99
Member
Member # 39551
Default  Posted: 2:26 PM, September 3rd (Tuesday)

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.


Posts: 556 | Registered: Jun 2013
authenticnow
Moderator
Member # 16024
Default  Posted: 2:29 PM, September 3rd (Tuesday)

Sending good thoughts and prayers for your daughter.


Take up your space (and do it well).

"That's the thing about pain, it demands to be felt."


Posts: 37371 | Registered: Sep 2007
homewrecked2011
Member
Member # 34678
Default  Posted: 2:51 PM, September 3rd (Tuesday)

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.


me BS 52
him - 46
married 15 years DIVORCED 10 31 12
children - ds15 ds12
d-day 12-19-11
I gave a 24hour ultimatum then went to attorney next day
Divorce filed

Posts: 2065 | Registered: Jan 2012
cantbelieve
Member
Member # 22028
Default  Posted: 2:57 PM, September 3rd (Tuesday)

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....


Me: BS (58)
Him: WS (58)
LTA 4 years with co-worker
DS(26)
DD(23)
DD(20)
Married 29 years
D-day1 5/08
D-day2 11/08
Status: 6 yrs and wondering if I'll ever be truly happy again

Posts: 1061 | Registered: Dec 2008 | From: DFW
cantbelieve
Member
Member # 22028
Default  Posted: 4:25 PM, September 3rd (Tuesday)

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


Me: BS (58)
Him: WS (58)
LTA 4 years with co-worker
DS(26)
DD(23)
DD(20)
Married 29 years
D-day1 5/08
D-day2 11/08
Status: 6 yrs and wondering if I'll ever be truly happy again

Posts: 1061 | Registered: Dec 2008 | From: DFW
still2suspicious
Member
Member # 31722
Default  Posted: 5:15 PM, September 3rd (Tuesday)

Have a safe trip cb.

Sending prayers.


Me: BS
Him: WH
DDay: LTEA

Posts: 1278 | Registered: Apr 2011 | From:
osxgirl
Member
Member # 8795
Default  Posted: 5:18 PM, September 3rd (Tuesday)

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)]


Posts: 2389 | Registered: Nov 2005 | From: Maryland
Kajem
Member
Member # 36134
Default  Posted: 6:25 PM, September 3rd (Tuesday)

Prayers being sent , safe travels.


I trust you is a better compliment than I love you, because you may not trust the person you love, but you can always love the person you trust. - Unknown
Relationships are like sharing a book, it doesn't work if you're not on the same page.

Posts: 5017 | Registered: Jul 2012 | From: Florida
kernel
Member
Member # 27035
Default  Posted: 7:49 PM, September 3rd (Tuesday)

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


"On particularly rough days when I'm sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% - and that's pretty good."

Posts: 5058 | Registered: Jan 2010 | From: Midwest
cantbelieve
Member
Member # 22028
Default  Posted: 8:08 AM, September 6th (Friday)

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.


Me: BS (58)
Him: WS (58)
LTA 4 years with co-worker
DS(26)
DD(23)
DD(20)
Married 29 years
D-day1 5/08
D-day2 11/08
Status: 6 yrs and wondering if I'll ever be truly happy again

Posts: 1061 | Registered: Dec 2008 | From: DFW
cantbelieve
Member
Member # 22028
Default  Posted: 11:26 AM, October 31st (Thursday)

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.


Me: BS (58)
Him: WS (58)
LTA 4 years with co-worker
DS(26)
DD(23)
DD(20)
Married 29 years
D-day1 5/08
D-day2 11/08
Status: 6 yrs and wondering if I'll ever be truly happy again

Posts: 1061 | Registered: Dec 2008 | From: DFW
lieshurt
Member
Member # 14003
Default  Posted: 12:06 PM, October 31st (Thursday)

Sending lots and lots of mojo your way.


I'm sorry if you don't like my Honesty, but to be fair I don't like your lies.

Sometimes it's better to push someone away...not because you stopped loving them but because you can't take the pain anymore.


Posts: 13724 | Registered: Mar 2007 | From: Houston
tushnurse
Member
Member # 21101
Default  Posted: 12:15 PM, October 31st (Thursday)

MoJO for your baby girl, and you.

Hang in there.
So glad noone was anxious to do surgery, like I said before it's no cake walk, and I've seen it do nothing to help with the issues at hand.


Me: FBS
Him: FWS
Kids: 15 & 17
Married for 22 years now, was 16 at the time. .
D-Day Sept 26 2008
Fully R'd, and Happy Happy Happy

Posts: 8229 | Registered: Oct 2008 | From: St. Louis
JustDone
Member
Member # 9742
Default  Posted: 12:38 PM, October 31st (Thursday)

Just saw this thread, Cant, thinking of you and your DD.

My DD is currently under the care of The Michigan Headache & Neurological Institute, one of the best in the Country. I know you're far away from here, but I just wanted to let you know I understand how hard this is.

Has she had a spinal tap, MRA or a MRV? My DD is also out of school, and too sick to participate in soccer, too. All my good thoughts and prayers go out to you, and your family.

PM coming...

[This message edited by JustDone at 12:49 PM, October 31st (Thursday)]


Forgiveness is giving up the possibility of a better past.

Nobody forgets what happens, the secret is learning to live with it.


Posts: 2783 | Registered: Feb 2006
sisoon
Member
Member # 31240
Default  Posted: 6:36 PM, October 31st (Thursday)

Count me in.


fBH (me) - 70 (22 in my head), fWW (plainsong) - 65+, Married 45+, together since 1965
DDay - 12/2010
Recovered, not yet fully R'ed
I share my own experience because it's the only experience I know, not because I'm a good model.

Posts: 9991 | Registered: Feb 2011 | From: Chicago area
Chrysalis123
Member
Member # 27148
Default  Posted: 7:27 PM, October 31st (Thursday)

Praying


Dont get to the end of your life and find that you lived only the length of it; live the width of it as well.

Posts: 2651 | Registered: Jan 2010
Topic Posts: 24