The most difficult chore for me is going to the grocery store. From items on lower shelves to the refrigerated areas, I'm glad when I'm ready to leave.
QUESTION: What chore is the most difficult for you?
Message Board
by pete
by pete
I'm not looking forward to the upcoming cold-weather season. It makes all of my symptoms worse.
QUESTION: Does cold weather also give you problems?
by pete
I had decompression surgery on May 11, 2009. My neurosurgeon is Dr. Larry Khoo.
QUESTION: When was your surgery and who was the surgeon?
by pete
Facing Chiari on a daily basis is obviously a tough battle. One of the things that keeps me going is running the International Chiari Association (ICA), as we help people seven days a week.
QUESTION: What keeps you going on your Chiari Journey?
by pete
September is Chiari Awareness Month.
QUESTION: What are some creative ways to celebrate Chiari Awareness?
by pete
The large majority, if not all, Chiarians have had doctors dismiss their symptoms. Today, I was thinking about one of those many doctors that have treated me poorly in the past and wondered what I would say to this person if I ever saw him again.
The first thoughts that flashed across my mind were the following: "I wish you knew about Chiari because then I wouldn't have had to suffer so much."
Then I would have handed him my card from the ICA.
QUESTION: What would you tell one of your past doctors if you saw him or her again?
(Please limit your comment to two or three sentences and keep it G-rated.)
by pete
Before I learned that I have Chiari, I was misdiagnosed with chronic fatigue syndrome, fibromyalgia and depression.
QUESTION: Were you misdiagnosed before finding out that you have Chiari? If yes, what were you misdiagnosed with?
by pete
I have three different types of headaches: (1) it feels like someone is palming my head like a basketball; (2) pain on only the left side of the skull; (3) pain in the back of the skull.
Whenever I have a headache, it is always one of those three.
QUESTION: Do you have headaches in different places?
by pete
Chiari can slow down your life and then turn it in so many different directions. One of the things I wish I did was have more fun in life, but I've always had to work hard to take care of my family. Now, thanks to Chiari, I probably won't be able to do some of those things again.
QUESTION: What is your biggest regret?
by sara052420
What age did you find out that your child has chiari? I am 30 weeks and my doctor found out at my 20 week ultrasound that there were no signs of chiari but she did tell me that even though there are no signs yet, she could still have it but they are just unable to see it through ultrasounds. They informed me that even with how advanced technology is today, sometimes they can see it and sometimes they cant.. but with my ultrasound it was more of a so-far-we-cant-see-it-so-try-not-to-worry kinda thing!
So my question is.. What age was your child when you found out he or she has chiari? What were the symptoms that caused you to get an MRI done? Thanks!
by pete
In some families, there are more than one person that has Chiari malformation.
QUESTION: Does anybody else in your family have Chiari?
by Debra-Haynes
Hi guys,
My name is debra, i just joined. I have a couple questions for ya'll. For the last 3 r 4 days I have a hard time swallowing anything but liquid. Its kinda like I dont have enough salava to swallow anything & the next problem is REALLY CRAZY, Its like my jaws get tired of chewing & the back of my tongue feels like its soooo tired i have to stop chewing my food & let it rest a few seconds before i can finish chewing up my food & i have to get a drink of something before I can even swallow then. I know this sounds crazy..... but Im hoping someone can tell me i am not totally crazy & this has happened to someone else & ya'll can tell me what to do.
THANKS SOOOO MUCH XOXO
by pete
I had decompression surgery on May 11, 2009. My headaches aren't as frequent or severe (and they don't last as long), but I still get them. Usually, a headache occurs if I have to bend down or do something that requires a little straining. They usually last for a few hours.
QUESTION: How long do your headaches usually last?
by pete
Chiari malformation has been known to alter and even destroy lives.
QUESTION: What has Chiari taken from you?
by lissamel84
Has anyone had nerve damage from their surgery? I have nerve damage and have had 2 rounds of steroid injections for pain. I'm curious if anyone has had any other treatments and how well they have worked?
by sara052420
Just wanted to update yall on my boyfriend. He has Chiari, 12mm and had decompression surgery last November 2011. To say it was a rough recovery would be an understatement. They didn't sedate him enough, and he was up walking around & trying to fight all the nurses & doctors 16-17 hours AFTER surgery (he was having a horrible reaction to the anesthesia). He is a machinist, works 12 hour days 7 days a week and after the surgery they released him to go back to this heavy work load within 2 months. I tried to say my opinion and say he wasn't ready but no one listened.
We finally got some news regarding his pain he's been having since his decompression surgery. Apparently, when he was in the hospital healing from his surgery... he was moving way too much & was released back to work way too soon so it never healed properly around the incision site. He has major inflammation, muscle spasms, and little nerve damage. They would like to put some shots into his neck to stop the inflammation, but there's not much they can do about the muscle spasms and nerve damage.
Makes me very angry the doctors didn't listen to me about him when we were in the hospital because i repeatedly told them it was too soon, they kept telling me he was ready. Anyone else have any experience with this kind of issue after having decompression surgery? What did you do, if anything, regarding the poor medical care? We would appreciate any and all feedback! Thank you!
by pete
One of the many things that I tell people, who are going in for decompression surgery, is to expect the first two days to be very difficult. After that, things usually improve as time goes on.
QUESTION: What advice would you give someone having decompression surgery?
by pete
People often travel during the summer.
QUESTION: What traveling advice would you give to people with Chiari?
by pete
My symptoms (pain, fatigue, etc.) get worse with cold and damp weather.
QUESTION: I'm curious to know if other Chiarians experience the same thing. How does the weather affect you?