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New here with Chiari Malformation

Apr 24, 2016 1:35 PM

Hi everyone. I've been using the app for a while now, but just started with the community today. I'm 51 years old, happily married, and live in the Rockies in Colorado, USA.
I have a fairly rare genetic disorder called Chiari Malformation.
Here's a link if you're curious: http://www.webmd.com/brain/chiari-malformation-symptoms-types-treatment
wasn't diagnosed until I was 40. Since then I've had 5 surgeries on my head. In total, they've removed 12 cm from my skull, the C-1 and C-2 from my neck, and the back part of my brain.
I live in constant pain and many days I can't get out of bed (today).
I could go on for ages, but don't want to bore you. I'm looking forward to getting to know some of you.
Thanks for reading,

Apr 24, 2016 5:42 PM

I think that went well. :-(

Apr 24, 2016 8:07 PM

Welcome to the community family Lynette! I'm sorry for the pain you're going through. I don't have chiari malformation, but I do have cervical disc issues from C1-C7, thoracic & lumbosacral issues. I'm having issues in my scapulas and hands from my neck right now, and start PT to try and realign my discs on Thursday. I can't imagine the pain you must be in. I hope you will meet others here with the same dx, who hopefully can share their ways of coping. I've learned to pace myself from day to day, enjoying what I can and pampering myself when needed, like the 3+ hour nap I crashed in today. Lol. Hugs & prayers! πŸ™‚πŸ’•πŸ™

Apr 25, 2016 12:41 AM

Hi Lynette nice to have you here. I just did a quick read up of your condition. It is rare and I was incredibly ignorant so I thankyou for opening up and sharing your life to help educate and inform me. The board has lively, robust, gentle and quiet moments as the community is world wide and covers many time zones πŸ˜€ be kind to yourself and I hope you join in the fun as you are able πŸ‘

Apr 25, 2016 4:11 AM

Hi , I just read up on Chiari, so sorry for your pain. I have my issues a plenty, and deal with pain myself. It just plain stinks! I try to medicate when possible and keep my mind busy, sort of hard from 3am on, so I listen to Audible often. Meditation to a good thiller. Welcome and peace to you :) Lisa

Apr 25, 2016 1:17 PM

Hi Flappyslady81. Thanks for your response. I'm so sorry for your pain. Back pain is terrible and affects so many parts of your body. I forget which one it is, but I have a herniated disc in my lumbar area. I'm starting PT for that really soon. I really hope it helps you.

Apr 25, 2016 6:36 PM

Hi Lynette, I, too, had to go looking for info about this disease you have. Never heard before of it. You are a rare & delicate orchid! Oh, geez all those surgeries! You are in need of some powerful pain warrior info & good conversation. This is an awesome group. I know you will fit right in.
I have the I-have-been-kicked-in-the-butt syndrome, according to Loki, Lol. DDD, scoliosis, OA & sciatica. It has been getting much worse with time. I am trying to keep it together. This group has been very sharing & kind. Welcome.

Apr 25, 2016 6:42 PM

Welcome Lynette, I don't have Chiari, but I do have pseudotumor(NOT shunted at the moment and I hope I never have to be shunted) and I do indeed feel your pain. I also have DJD(L4-S1) with facet joint issues, sacroilitis, spina bifida occulta(very mild-only visible on x-ray). Again, please ask if you have any questions and welcome.

Apr 25, 2016 6:52 PM

Thank you Lynette. I hope your therapy works also. It's been awhile but I know others in the community have it. That's how I first heard of it. Many don't come online daily or even weekly. Hopefully they will see it soon. Hugs & prayers! πŸ™‚πŸ’•πŸ™πŸŒΌ

Apr 27, 2016 3:24 PM

Welcome Lynette, I don't have Chiari, but I have a cousin who does, and two of her three sons as well, or was it three of her three sons? Darn, I can't remember. Anyway, all of them that have it have had decompression surgery. Her youngest son was hit in the head with a baseball only a week after having the surgery. They Mercy Flighted him to Buffalo Children's Hospital at the time it happened. Thankfully he was fine, and suffered no lasting effects from it.

I hope you can find a treatment that works for you as well as it did for my cousin and her sons.

Aug 14, 2016 3:30 PM

Hi Lynette, I hope you're having a "good" day and not in too much pain. I too have chiari and syringomyelia and was decompressed in 2008. The surgery helped with some of the symptoms but also created some new ones. I had to have a second surgery to decompress both occipital nerves to help with the occipital neuralgia. Unfortunately neither surgery helped enough to lead to a more "normal" life without pain. I know how hard it is when there is no one who truly understands the daily struggle so if you ever need anyone to talk to let me know.


Aug 15, 2016 12:10 AM

⚘Its great to meet u sweetie... so glad u decided to say hello πŸ€—
Welcome to the community, 😚 sending gentle hugs ur way πŸ€—

Nov 03, 2016 7:41 PM

I have Chiari and have had decompression surgery in 2009. I love yo visit the Rockies Do you find the elevation contributes to your pain, or isn't a factor? Just curious as I have heard yes and no from other Chiarians.

Nov 04, 2016 2:27 AM

Lynette, welcome to the community!!! I do not have the issues you are suffering but hope that you are able to find a doctor or team of doctors who can help you have a more comfortable life. Sending gentle {{{Hugs}}} your way!!πŸ’•πŸ˜Š

Nov 04, 2016 6:13 PM

Lynette, I have a friend who has a son with Chiari. I suffer from Idiopathic Intracranial Hypertension which can be a side effect of Chiari. I'm sorry you are going through this.

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