Teen daughter new to CM Type 1

General Parents and Caretakers of Children with Chiari
1

Hello all..

My 13yr old daughter was just diagnosed on Jan 27th with CM Type1 and we now wait for a brain & spinal MRI on Feb 23th.

Her Pediatric Neurosurgeon here in Louisville does plan on doing surgery,after we see him Feb 24th.

My daughter first was seen for a fracture in her C7 T1 Spinal Plate with a possible other abnormality,once we had the MRI done it was confirmed she had CM.

Her symptoms were numbing right arm/hand,balance off,dizzness, fatigue,loss of appetite,neck pain,headaches,trouble swallowing.

If any of you have children who had this surgery how was their recovery time and what limitations do they have?

Will she be suffering of the rest of her life with symptoms?

Thank You

2

Hopefully some of the other parents on the board will chime in. From what I’ve seen it seems younger patients have easier recoveries and also see less lasting damages so the prognosis is good for your daughter. Surgery is not considered a cure but more a treatment to alleviate symptoms and to prevent progression, however many people go on and lead normal lives with few issues.

3

Hello Mandy,

Thank you for the FB group request,so glad you sent it to me, and I printed up the "Understanding Chiari" as well and made several copies for family member's.

My Macy has several of the symptoms and she was originally seen for a fracture in her C7 T1 Spinal Plate from an accident we had in 2008, it was not diagnosed than but when we had an Xray in Dec 2014 the Dr said she saw it and showed it to us along with what she said looked liked an "Abnormality" that had to be CT scanned which they did right away. She ia seeing one of the Neurosurgeon's on the list here on Ben's Friend's and I researched him and he seems to have a great success rate with all of his surgeries. I am praying and trying to be positive through all this and don't want me daughter to slip in to a depression because I know that will make recovery time worse.

So glad I found this community and some answers!

Thank you,

Nancy



Mandy said:

Hello Nansel66,

I'm sorry to hear your daughter has been experiencing these symptoms. I'm really glad to hear they are doing further testing to isolate the problem.

Something to consider, there can be additional conditions that can cause problems with surgery. Most neurosurgeons do not screen for these conditions, and unfortunately if the surgery fails, the neurosurgeon may not help if they consider the surgery to be a success.

Please read the Understanding Chiari document at the top of the page. If you have any questions, post a discussion or ask a moderator. There is a 40% failure rate for posterior fossa decompressions at the two year post-surgical mark, and anything you can do to prevent that is a good thing. Unfortunately, we see members who have had a failed surgery, and have a really difficult time finding a specialist to help since the surgery is considered a success by their neurosurgeon.

Keeping you and your daughter in my thoughts!

Mandy

4

Mandy,

What you wrote was not depressing,it was real facts and that's what I'm about,knowing things may not be ok.

I'm not new to dealing with life changing illness as I have a sister who has had Lupus for over 30 yrs and I've seen her highs & lows,been to the ER with her more times than I can count...lol

My Macy has been through a lot of emotional things loosing Grandparent's,Uncles,seeing her Aunt be so ill,we as a family went through foreclosure in MI and loss of jobs.

We now live in KY,hubby works for Ford,so things have improved,but now with this diagnoses I don't want Macy to slip in to a depression so I'm looking for a therapist for her to talk to.

My,Dad,Aunt's and friend's are good to cry with but a therapist can offer some things I can't.

One thing that surprises is how her PCP kinda sounded stand offish about her having surgery,saying things like

Well you know "It's NOT a cure all" and "You'll have symptoms forever"...I really did not like that,she sounded more doom and gloom than anybody.

Macy had a rough week,headaches,very sore neck,right arm & left leg going numb.

She has her MRI's on Mon Feb 9th & follow up with her Neurosurgeon on Fri Feb 13th.

Thank You so much for chatting with me,

Have a great weekend!

Nancy