Wednesday, October 2, 2013

Six Years and Counting

Six years ago at this moment, I was on the operating table in the midst of the surgery that would change my life.

Until the days and weeks after that surgery, I had never realized how much my life was affected and hindered by a condition that had only been diagnosed three months prior.

The first big thing I discovered was the overwhelming smell of the flowers I had received. I remember walking into the guest room at the Hart's a few days post op and being hit by a wall of fresh floral scent. I thought it was just those flowers, but I soon learned that all flowers smelled that strongly, I just had a limited ability to smell before surgery.

In the last year I have been practicing yoga several times per week. Sometimes I add in Pilates too. Any exercise with impact aggravates my neck and back, so I just stay with no impact activities. No longer needing to carry my babies all the time has helped my back as well. I can't believe I will soon have two 4 year olds and a 2 year old!

While yoga would have helped me before surgery, I don't think I could have done it without awful Chiari headaches. Old habits die hard though and I still find myself scared to try poses that I wouldn't have been able to do before surgery. Often, I find I can do them without any issues and that makes me a little more confident in trying the next one.

17 comments:

Genevieve said...

Hello jenn, like you, I'm a stay at home mom of two kids, 7 and 5, and like you, I never heard about chiari malformation before last June. I've started having terrible head pain 6 months ago and I got the diagnostic in June, after an MRI. I got the decompression surgery 3 weeks ago. I' m still having right now a lot of head pain, but I guess it's still normal. How long did you had the symptoms after the surgery? When did you start feeling that your live was back to normal? Hopefully, now my two kids are in school, so I can have some rest during the day, but I have to admit that I find it quite hard to recovered, especially that I'm uses to be a very sportive and dynamic person, I used to be a professional ballet dancer before the kids, and being in bed, is quite something unusual for me. Thanks for sharing your story, it gives me hope that I will be able at one point to started again a normal life in a not too far future.

Best,

Genevieve

Genevieve said...

Hello jenn, like you, I'm a stay at home mom of two kids, 7 and 5, and like you, I never heard about chiari malformation before last June. I've started having terrible head pain 6 months ago and I got the diagnostic in June, after an MRI. I got the decompression surgery 3 weeks ago. I' m still having right now a lot of head pain, but I guess it's still normal. How long did you had the symptoms after the surgery? When did you start feeling that your live was back to normal? Hopefully, now my two kids are in school, so I can have some rest during the day, but I have to admit that I find it quite hard to recovered, especially that I'm uses to be a very sportive and dynamic person, I used to be a professional ballet dancer before the kids, and being in bed, is quite something unusual for me. Thanks for sharing your story, it gives me hope that I will be able at one point to started again a normal life in a not too far future.

Best,

Genevieve

Genevieve said...

Hello jenn, like you, I'm a stay at home mom of two kids, 7 and 5, and like you, I never heard about chiari malformation before last June. I've started having terrible head pain 6 months ago and I got the diagnostic in June, after an MRI. I got the decompression surgery 3 weeks ago. I' m still having right now a lot of head pain, but I guess it's still normal. How long did you had the symptoms after the surgery? When did you start feeling that your live was back to normal? Hopefully, now my two kids are in school, so I can have some rest during the day, but I have to admit that I find it quite hard to recovered, especially that I'm uses to be a very sportive and dynamic person, I used to be a professional ballet dancer before the kids, and being in bed, is quite something unusual for me. Thanks for sharing your story, it gives me hope that I will be able at one point to started again a normal life in a not too far future.

Best,

Genevieve

Anonymous said...

Hello. My name is Court. I had decompression surgery 6 months ago in April. I now believe I may be pregnant. I am too nervous too test! But I was curious if your pain got worse as the weeks went on? Please contact me Courtney.jacob1992@gmail.com I just feel my head sharp pain has increased. Thank you

Lindsey said...

Jenn, I have read your story from beginning to end today and I've cried and laughed along with you. This past Tuesday, I was diagnosed with Chiari Type I by 13 mm. I was scared to death until I found your blog... after reading, I feel like 10000 pounds have been lifted off my shoulders. I'm so relieved that you're doing so well, I hope I will be too. Anyway, because your blog helped me so tremendously, I decided to make my own in hopes of helping others, as well. I'll provide the link at the end. I want to thank you SO MUCH for sharing your story. Most others that I've found are somewhat of horror stories, and I keep coming back to yours for reassurance. THANK YOU JENN!
Here is my blog link with my own story :)
http://lindseyhaschiari.wordpress.com/

I also have a ton of non-procedural type questions, but I can't figure out how to email you. If you don't mind, could you email me at ffp192@mocs.utc.edu ? thank you so much jenn.

Anna Schoster said...

Hi! I also have Chiari Malformation I. I am glad to hear you are doing well! Have you had to surgery for Chiari? If so, had it made a difference by decreasing any symptoms?

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Professor C. Toney said...

In a car accident a couple of years ago. Through testing, MRI it was found that I have CM - 1. No symptoms but understand why some movements irritate, why I'm a night owl and why younger sister had a rare form of scoliosis. I guess I should join a group, would like to know more about the disease and chat with others that have it. I am a Army Veteran that had no idea I had this condition, had I known I'm not sure I would have enlisted (glad that I did) anyway.
Living with CM-1. Not so bad yet!

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Anonymous said...

Hi Jennifer my 19 yr old daughter was just told she has low lying cerebrall tonsils and I found your blog and it is definitely giving us a lot of hope!! Thank you so much for sharing your story! I was wondering if you will be updating anytime soon? I'm glad you had such a successful outcome!

This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.