Chiari

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Chiari

Postby Annalee Schilter » Mon Mar 16, 2009 12:01 pm

Hello-

I am very new to this site- My daughter who looks acts totally normal was just diagnosed with a Chiari- what ! I said - Well now doing research on my own with google it- I am finding that I am feeling terrible due to she is only 7 and we have an appointment in Seattle, Wa on Friday with Dr. Ellenbogen. Is this my journey to hell? I have read numerous horror stories and we are strict catholics and I feel like god is slapping us for this- I do not understand and am in tears and confused. I am scared- I have two daughters one 8 and one 7 Annalee is the one that is going to Seattle Friday- My oldest feels Annalee is being favored because we dont want her to get stressed so YES we have been babying her a bit. We dont know how bad she has this yet but sure to find out Friday with the spine MRI- she has bad headaches and always in the back of her head and she gets cold alot. Any new comers like me that are not coping well- sorry but I have to vent-

Is this a journey that I am gona cry everyday with or what to do? I read about the surgerys that never help and make things worse. Please respond- I am terrified.

Pam
Annalee Schilter
 
Posts: 4
Joined: Sat Mar 14, 2009 10:57 pm

Re: Chiari

Postby youngwife » Mon Mar 16, 2009 7:47 pm

Pam,
Hi! I am a mom of six, and of them two have been diagnosed with Chiari.

First, let me say welcome to ASAP! :)

Many of us have been right where you are right now. That's what we're here for, to support and encourage each other. So, what you are feeling is quite normal and to be expected.

But, you've got to move past the shock factor. Chiari may seem like a curse at times, but it is not. It is a genetic disorder that no one has any control over. I am a Christian, and I do not believe that God allows these things in our lives as "punishment". They are used to shape us and mold us into vessels that will eventually bring Him the glory and honor He deserves, but I do not believe there is spite involved.

Yes, your daughter has Chiari. However, spoiling or coddling your daughter will NOT prepare her for what's ahead, nor will it help her symptoms. Yes, she may need to restrict her activity, but boundaries still need to be set, and you still need to be her parent.

As a mom, it is hard to know when to push and when to allow them to just be. The times that my daughters are snappy or rude are when I draw the line and have to put my foot down with, "Hey, I know you are hurting, but you are not allowed to ____".

There is not cure for Chiari. This will be a life long condition for your daughter, but that does not mean that she will have symptoms for the rest of her life.

The decision to have surgery is a very complicated one. There are many factors involved that will influence your decision. Does your daughter have any syrinx? Does she have blockage of CSF? Are her symptoms debilitating?

I would wait and pray. Wait to see what the neurosurgeon has to say, and pray that the Lord will give you wisdom in parenting and deciding what path to take.

May the Lord bless you,

Rebecca

PS.
If you should have any questions, I would be happy to try to answer them...you may pm me if you'd like. :wink:
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
User avatar
youngwife
 
Posts: 1198
Joined: Wed Jun 27, 2007 9:36 pm
Location: At home with my children!

Re: Chiari

Postby Janice » Mon Mar 16, 2009 8:24 pm

Very well said, Rebecca. Ditto!!
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
Posts: 4412
Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

Re: Chiari

Postby youngwife » Tue Mar 17, 2009 6:40 am

Janice wrote:Very well said, Rebecca. Ditto!!


:wink: Gee, thanks, Janice. I am honored to be "Ditto'd" by a veteran such as yourself. :mrgreen:
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
User avatar
youngwife
 
Posts: 1198
Joined: Wed Jun 27, 2007 9:36 pm
Location: At home with my children!

Re: Chiari

Postby jupes » Thu Mar 19, 2009 11:52 pm

Annalee's Mom,
I replied to you in the "Untethering Surgery..Mostly a success" Post!
(((HUGS))) Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
jupes
 
Posts: 262
Joined: Fri Jan 09, 2009 2:37 am

Re: Chiari

Postby Ozzie's Mom » Mon May 18, 2009 12:06 pm

Hi: I am new to ASAP and am finding my way around. I have read about your daughter and am thinking about her and I will pray for you and your family. I am 60 years old and have a Chiari and I will be seeing Dr. Ellenbogen in Seattle July 13. I did see him last year and he said that he would do surgery to decompress, but I decided to wait. Now, I have decided to return to him because I am having more trouble sleeping, and other symtoms.

The reason I am writing is that I wished that I could have told you before you went to Dr. Ellenbogen that he would have calmed you and you wouldn't have had to be so scared about your baby girl. However, when your children are ill, it is the worst possible thing you have to go through! I know, I had three and we had many trials. Also, I am just curious if you could share what approach you have decided to take for your daughter. Dr. Ellenbogen is a Chiari expert; my husband spent much time checking his credentials.

This road that we are on is a bit scary, but this web site is a comfort. I will continue to pray for your family. God bless all of you.

Ozzies' Mom (Ozzie is my little dog, he's my little baby too!)
Ozzie's Mom
 
Posts: 46
Joined: Tue May 12, 2009 12:47 pm

Re: Chiari

Postby spergler » Tue Jul 21, 2009 11:07 am

hey,
I am 18 yrs old, and had decompression surgery in april and the end of May. I know that when my mom was in between the surgeries she was unsure she had made the right choice. Especially when the patch blew from my first surgery, she was angry at the situation at first, and then she realized that in the eternal relm of things this was just a small bump. Which allowed her to handel the difficult situation. Sorry not tring to scare you, but I want you to understand that everyone is scared of the unknown especially when it is their child it concerns.

Now for what I felt during the time from before, during and after. To start I would like to share with you my phylosophy of good, better and best. First, my life before my surgery was 'good' I had many opportunities to succeed, but I always had to deal with a headache. About six months ago my symptoms increased expentually, I had numbness, always cold and couldn't remember most things. The doctors told me I was just unable to deal with pain and wanted to send me to a pain clinic along with many other new treatments. The past nine years the doctors continually told me that I just had a low brain. My mom and I became desperate, searching in my medical history for something they had missed and found out that I had chiari malformation. What is that my mom and I had no idea and decide to look on the internet for more info. We were kind of scared and looked for possible none surgical methods along with the neurologist still not do anything when we confronted them with this information. The Neurologist told me that Chiari surgeries never work. My heart sunk for once again I was at a dead end, I had no idea how I was going to keep living with my pain. I nelt down and I just cried to my God and told him I couldn't do it anymore. Then a small inpression came that all would work out, it would not be easy but it would be definetly worth it in the end.

This was when my mom decide she was taking control we told the Neurologist that we want to see a Neurosurgen and he agreed to send a referal and we made an appoinment for a month later. The surgeon told us that I should do surgery as soon as possible, which ended up April 2.
After the surgery I felt reborn with all I thought I wanted, this was the 'better' part. After two weeks post op I started to leak from my incision. I had to go through lumbar drain, but this was still better than before. After about another three weeks I ended up leaking once more went to the emergency room and had surgery that evening.

Finally after my 2 surgery the first few days were pretty bad because I lost lots of spinal fluid. I would never change what the Lord guided me to do. My life now is definetly the 'best', I couldn't wish for more. No my life isn't simple or easy, but I can think without a headache I can walk, I can talk, and read books without feeling like my head would explode.

Pam, I would recomend praying to the Lord for what you should do for your daughter. He is always with us no matter what. There is a poem I'll just paraphrase. A man was looking back on his life and saw foot prints of his life in the sand. On looking bake he saw 2 sets of foot prints some of the time and the other part he only saw one. He turns to Christ and asks why during the hardest times in my life did you leave me alone. The Savior replied you were not alone I was caring you. I know we are never alone and if we rely on the Lord we will be helped. It may not be in the way we always want, but why would we want life to be our way. When we can have God guide our lives.
sharisa
Last edited by spergler on Thu Jul 23, 2009 6:09 pm, edited 1 time in total.
spergler
 
Posts: 1
Joined: Tue Jul 21, 2009 10:16 am

Re: Chiari

Postby wendi » Wed Jul 22, 2009 9:00 am

Hello Pam & welcome:

You have been given some very good advice so I won't add to that.

You have one of the best experts around in Dr E so that should make you feel better. I can take years to get a diagnosis and find an expert, so you are ahead of the game. I hope this makes you feel better too.

We are here for you, so you are not alone.

Sharisa: What a mature young lady you are. I am sorry you have had to go thur all this cm junk, but it has made you into a caring and articulate woman.

Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
Posts: 3346
Joined: Thu Aug 16, 2007 9:48 am
Location: Whitehall, Pennsylvania

Re: Chiari

Postby kldhamel » Wed Jul 22, 2009 9:44 am

I am very new to this site as well and I was diagnosed with a CM just over 8 years ago. I had the surgery to decompress things and up until now I have been pretty much symptom free. So please do not let this get to you until you have all your ducks in a row. A lot of things I have read here would get me upset if I was just finding out about this for the first time.

I guess in a way I need to look at my self as being lucky since my symptoms are not as sever as others. I am going to get an MRI done this Friday because over the last few months symptoms have started to trickle back into my life.
I was lucky and rebounded very quickly from surgery that I had. So much so that my doctor would have others that were going in for surgery call me to ask any questions.

I guess what I want to say is take a step back and take a deep breath. Go through the motions with the doctor and the appointments.

I am happy that this site is here. To help answer my questions and read about others. Do not just focus on the “horror stories” you have to also look at the successes. There are a large number of people in the world that have this and they never know and are symptom free.

Good luck
Kimberly
kldhamel
 
Posts: 6
Joined: Tue Jul 14, 2009 12:14 pm

Re: Chiari

Postby wendi » Wed Jul 22, 2009 11:03 am

When I went back and looked at this, this is an old post from March that was replied to and it looked new to me so here I go trying to help someone who has already taken her daughter to the NS and never came back.

That is the bad thing about these old posts, when you respond to them, it bumps them up and unless you check, you don't relize they are old. Ooops.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
Posts: 3346
Joined: Thu Aug 16, 2007 9:48 am
Location: Whitehall, Pennsylvania

Re: Chiari

Postby kldhamel » Thu Jul 23, 2009 6:25 am

Oh wow. I did not notice it. I assumed it was new since it was sitting towards the top of the lists. Thanks for the info. I am so glad I am going for that MRI this Friday. I have had a headache since last night. I just want to know what is going on "in there". Have a great day.
kldhamel
 
Posts: 6
Joined: Tue Jul 14, 2009 12:14 pm


Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 7 guests