Chiari Malformation - Online Support Group
We are patients and survivors of Chiari (types I-IV), here for your support.
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Valaree
- Female
- Story City, IA
- United States
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Valaree's Discussions
10 days post op
Started this discussion. Last reply by mommy.of.two.5483 Dec 27, 2011. 7 Replies 0 Likes
I had my surgery on December 16th. The NS said that I definitely needed the surgery. My skull had formed a hook at the bottom and was pushing into the brain worse than he released. After getting rid…Continue
Hair coloring
Started this discussion. Last reply by lesliesch Dec 10, 2011. 3 Replies 0 Likes
Silly question - I am one week from surgery, is it safe to color my hair this weekend? I'd like to cover the gray now because I know it will be a while again before I will be able to get to it.…Continue
9 days to go.... any tips and tricks??
Started this discussion. Last reply by lori Dec 8, 2011. 3 Replies 0 Likes
I'm scheduled for surgery on December 16th. Any information that can be shared will be helpful. What should I expect in the hospital and then when I get home? I realize that everyone has different…Continue
Valaree's Page
Latest Activity
Valaree replied to Christy Mullen's discussion Got good news today"Hi there! I am from central Iowa. I am three months post-op with Dr. Menezes in Iowa City. My son also has Chiari (thankfully no surgery yet). His pediatrician told us NOT to go anywhere but to Dr. Menezes because he is one of the world's best.…"
Valaree replied to Caroline Power's discussion After surgery"Caroline,
I am 14 days post op. You have learned that you will have pain and discomfort. It is tough to hear before surgery, but I felt that the more I knew the better prepared I would be. Many times after surgery, I could tell that I was…"
mommy.of.two.5483 replied to Valaree's discussion 10 days post op"I was able to wash my hair on day 3 and every day after that. I had sutures that were taken out 2 weeks later."
Valaree replied to Tonya J.'s discussion 10 days postoperative"I did not have to have Morphine, I think I'm glad I didn't. My NS puts in a 36 hour nerve block so I had been warned that the pain would be horrible after that. Honestly, it was there but no as horrible as I had anticipated. I did/do have…"
Valaree replied to Valaree's discussion 10 days post op"Tonya,
I have been told that my incision is about six inches long. I did have a chunk of hair shaved, he left about an inch behind each ear and it goes from my neck up about 4 - 6 inches. I have shoulder length hair (for now) that does cover…"
Tonya J. replied to Valaree's discussion 10 days post op"Hi Valaree. My daughter had her surgery on the 17th. It's very interesting to hear of the different techniques that dr's use. My daughter has 18 dissolvable stitches. She's supposed to wash her hair everyday with baby shampoo. She…"
mommy.of.two.5483 replied to Valaree's discussion 10 days post op"Yay to being pampered!!!!! It makes me happy to hear when people were blessed with wonderful medical staff and a supportive family. There is truly nothing better then that when going through this process : )"
Sherry replied to Valaree's discussion 10 days post op"If your doctor permits, I held a folded up plastic bag over the surgical tapes and put my face down into a towel in the kitchen sink while my sis used the sprayer to wash my hair. She stayed well clear of the incision. Then we blow dried the hair…"
Moderatorlori replied to Valaree's discussion 10 days post op
"HI VALAREE:
So good to hear from you...sounds like things are going very well..I am so happy that you are being pampered at home.
Take this time to relax and let your body heal.
Keep us posted on your recovery.
Peace,
Lori"
Valaree posted a discussion10 days post op
I had my surgery on December 16th. The NS said that I definitely needed the surgery. My skull had formed a hook at the bottom and was pushing into the brain worse than he released. After getting rid of that hook and releasing a "band" the CSF started blossom through my brain. He told my husband that I would be a "happy girl." My NS believes in putting his patients in ICU for at least the first 24 hours. 24 hours after surgery, my orders were in to move me to the neuro/surgery floor of the…See More
Valaree joined Christine's group
Midwestern Chiarians
The purpose of this group is for people in the midwestern states to come together and share information in our general locale.See More
hopeful1 commented on Valaree's event Valaree's surgery"Praying that everything went well. Thinking about you and wishing you well.
Carrie :)"
Valaree's surgery at Iowa City, IA
December 16, 2011 all day
Decompression surgery in Iowa City, IASee More
Profile Information
- When were you (or the patient) diagnosed?
- September 19, 2011
- What treatments have you undergone? What treatments are you currently undergoing?
- I have only had one visit with my neurosurgeon. I am scheduled for surgery on December 16th.
- What's the current status of your Chiari?
- My Chiari is 24mm, awaiting sugery
- Please share the rest of your story with the community...
- My Chiari was only found aftery my youngest son, was diagnosed 9 months ago. Thankfully he is almost symptom free at this point. His herniation is at 9mm. After seeing the NS for him, I starting putting a lot of my symptoms together. I met with a Neuro PA in September who ordered an MRI. I am now under the care of Dr. Menezes at the University of Iowa. He also sees my son.
- How did you hear about ChiariSupport.org?
- Other
- If referred by a member, please list member's name.
- n/a
- Why did you decide to join (multiple answers okay)?
- Information: I want to learn more about symptoms/treatment
Comment Wall (5 comments)
- At 9:22am on December 08, 2011, lori gave Valaree a gift…
Moderator 
Hi... Thinking and praying for you ...the 16th will be here and then you will soon be on the road to recovery!!
- At 8:08am on November 21, 2011,
ModeratorAbby said… Valaree,
Bless you and your son. It is so hard having Chiari, but having a child with it too, must be hard for you. There are studies going on right now for 2 or more in your family who have chiari. Please post your surgery date in the events so we can check on you and pray for you. Wow, 24 mm, that is pretty big, my friend.
Your son need to watch hitting his head, because it can bring on the symptoms. His 9 mm is pretty big too.
Please start by making friends and if your son wants to join too, there are others about his age. Share with discussions, questions, etc. You will meet some really nice folks on here, which we are patients helping other patients.
God BLess and let us know if you need anything.
Abby
- At 11:53pm on November 20, 2011,
Scott Orn said…
Glad your son is symptom free Valaree! Big welcome to the site.
- At 4:53pm on November 20, 2011,
ModeratorLilyannes Mom said… Dear Valaree ~ Welcome! I know how terrifing this can be and in your case doubly so - I am the mother of a 20 month old who was diagnosed at the beginning of this year. She has already had 2 cranial decompression surgerys, and let me say things are different for little ones. If you have any questions or need anything, just let me know. ~ Dena
- At 2:44pm on November 20, 2011,
razzle51 said… Hello , I am Roz from sioux city , if you want to chat let me know .
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