I'm Jen living in northern Illinois on a small farmette! We raise cows, chickens and hogs. I enjoy gardening as well! I have two daughters, pre-teen and teen! I'm married to a wonderful man whom is a police officer for our city.
I work with Adults with Autism and that takes up a lot of my time...too much at times! I enjoy doing crafts and reading! Love to camp and be outdoors in general!
My mother is currently away in South Africa serving in the US Peace Corps and I miss her dearly! She left Feb of 2009 and was able to come home for a 3 week leave to take help take care of things when I had my decompression surgery in Nov of 09.
I also had brain surgery to remove a clot of blood and damaged blood vessels in 2006.
That is me!!! :)
Great idea Lisa!
I'm Carolyn, I live in Victoria, BC, Canada....and I don't live in an igloo...lol...
I had my first son at 21 and now I have 3...at ages 12, and almost 8 and 3. My husband is a self employed finishing carpenter, a venture that we stepped out on about two years ago..unfortunately, I started to get sick right after so it has been a struggle! For now, I am a stay at home mom but in the future I would like to go back to night school to finish my certificate to become a Hospital Unit Clerk.
I am very close to my family..we have had many health struggles over the past 4 years..first my sister had a very severe neurological episode in which she stopped being able to speak properly for about 6 months (still undiagnosed..I think it could be Chiari), next my dad had bladder cancer but is now in remission, then the stuff with me. I have to say that we are sooo lucky to have such good support in the family..it got us all through the rough spots!!
I enjoy volunteering with my son's Scout/Beaver group and at the school. I love to read, watch movies, do crosswords and take on some crazy projects.
I had surgery for Chiari on Dec. 29/09...which makes me almost 3 months post op!! As most of us, I am still dealing with lasting symptoms but for the most days I try to do it with a smile still on my face :)
Hi....u all know me as "selma"....it is an alias for the public forum....I usually do not tell people that, but I hope u all understand.
I am married to my DH for 31 yrs this May.We've had our ups and downs, one child a girl, who is living in Manhattan for 4 yrs ....she went to get her masters at NYU after graduating from the Unv of the Arts in Philly (4 yrs)....and now works for the City of NY public schools teaching dance.
We are planning her wedding to her long time and long distance BF since she was in high school....I hope that I am up to doing all the flowers for the wedding as I was a florist for over 20yrs, and had my own Wedding consulting business, the last 15 yrs I worked in a retail chain, first in the dress dept, than china and crystal as the bridal consultant
until I couldn't be on my feet and switched to a human resource rep/manager.....it was during this position that my symptoms got worse and I am here to share with u what I have learned and continue to learn from u.
I also love to garden, camp and go to musicals.....love all types of music.....and enjoy crafts of all kinds.
May I will be 1 yr post op and I am still having issues from tethered cord and cervical stinosis and EDS.
I am much better than b4 my surgery....but know I have a way to go.
I forgot to mention I live in Allentown , PA...Billy Joel sang about my town yrs ago...Living in Allentown.......it sits right btwn Philly and NYC....
I also love to travel when possible and my last trip was Guatemala....I have been to Venice, Paris, Austria(several cities), Germany( several cities) ....and several states in the US....MD, DE,MA,FL,VA,OH,NJ,NY,CT,NH
Oh and Jen...I always wanted to live on a working farm....I was a FFA member in High school!!...I raised market class rabbits and won blue ribbons at our local fair : )
I'm Stephanie, I am a mother to 3 boys and 1 girl..16, 14, 5 and 3. I am a stay at home..but I dont think that is very accurate since I am at drs or hospitals or the grocery store most of my days.lol.
My 16 yr DS has had 5 surgeries to repair tarsal colation in both feet. Something that has ran in my family we just never put the pieces together.
My 5 yr Ds was diag with Chiari unoffically the end of Feb '10 officially on March 3, 2010 and surgery was just on March 19th.
He just told me tonight that he feels better now then he did before we went to the hospital..it brought tears to my eyes. How much pain you guys must really be in/or have been in is unreal. I hope to help spread the word about Chiari..no one should have to live like this
I am Angie, I am a mother of 2, a son 8 and a daughter 4. I work as a Neonatal Transport nurse and I am going back to work on Monday! About time...I have been off for 3 months and I don't have a baby to show for it. ; ) I was diagnosed with Chiari in Sept had my decompression 1/6/10. Then as some of you guys know, I fell into that rare category of complications and had to have a shunt but so far since the last operation ( total of 3) I have felt like my old self!
I have been with my DH for 11 years, married 5 of them. He plays in 2 bands as a hobby and I enjoy watching him play! We are active with our communities boy scout pack, which my son is involved with and my daughter does dance. So we are busy, busy!
I plan to go to school, get my Master's degree here soon. I am just taking some time to enjoy my kids and family. This whole Chiari thing has been quite the ordeal, made me re-evaluate what is really important and what needs to be cherished. My poor daughter begins asking alot of worried questions everytime we get near the med center where I had my surgery. She gets quite anxious that I will be gone again and back in the hospital, so I hope that I don't have to go back for awhile and she has time to heal!
We love to travel and plan to do some this summer! SO that is my story...for now!
thanks all...its interesting to learn about ppl....
Angie- I know what you mean about children getting scared and fearing whats next-my son gets quite jumpy too anytime i either dont feel well or have to go for testing or something...like you i suffered a "rare" complication (so they say) and ended up also needing a shunt...what a ordeal that was...
Stephanie- awww thats so sweet your 5 yr old, i bet it would bring a tear to your eye- i remember when my youngest he was 5 at the time needed a mass removed from his neck and OH MY --tear jerker-- Your 16 yr old- wow 5 surgeries i think thats what i have in my left foot but i dunno- i had it repaired and now its back to doing what it done before...
Carolyn- thats awesome to have family and each able to help the other therough their journey
Selma- wow you been all over the place- awesome-
Jen- thats so cool of your mom to be there how long until she comes home?, Id think working with autistic adults would be a challange.
Well, I think everybody knows I'm Shannon ;) I live in Mississippi (born and raised here) My DH and i have been married for 10 years in May (together for 14) We have 3 children - 13, 8, & 5, a boy and 2 girls. They keep us very busy especially during football season! My husband works for the railroad and we have dj and karaoke business we do on the weekends, mainly private parties and weddings. Pretty much he does it now because i cant anymore and thats probably one of the things i miss the most, but the music and lights do me in. Right now i'm a stay at home mom. I love crafts, decorating, and traveling. Been to 30 states, Canada, and Mexico. This year the only traveling i will be doing is back and forth to Milwaukee. My decompression surgery is scheduled for May 24th with dr. Heffez. I guess thats it lol
I'm Rosemarie, I live in Portland OR and I've been married to my darling for 10 years, together for 14 but have known each other our entire lives. We have 3 adorable boys: nearly 6, just turned 4 and totally 2! I have an enormous family of cousins, aunts, uncles, that drive me nuts but I love them all to pieces. I have a sister and brother both younger than me, and both of my parents have suffered through multiple surgeries, many on their cervical spine.
I am a middle school language arts teacher and I love my job :) I also enjoy cooking and baking, crafting, reading, drinking coffee and most recently playing the wii with my kids (and with hubby after the kids are asleep :)).
I know that it's weird to put personal information out into the internet world -- and you never know what's true and what isn't for sure -- but it's good to share like this :) I feel like you all are my BFFs, especially since we have this common chiari enemy! I've browsed other forums and I have to say that the community of support we have here is pretty unique! Let's keep it up!!!
Three cheers for dear friends and spring sunshine!
p.s. My decompression was on jan 13 of this year and I'm just past my 2 month mark. Each day gets better and I feel more like myself again. Still struggle with tension headaches from stiff neck muscles and face pain that may or may not be sinus related. I have recently been suffering a lot with foot pain and swelling that makes it hard to move around but I'm working on that :) One day at a time...Hang in there all!
This is been nice to get to know people! Wow, the 5 year old, I would have bawled!
I would love to travel like you have Selma!! Maybe some day! I enjoy staying in the states and at times just one a vacation at home where I"M NOT SICK!! LOL I love my garden! I also can, forget to mention that! We try to produce a lot of our own food!
Working with autistic adults has been both a pleasure and nightmare! I don't know if I can keep up anymore with all the headaches!
My mother comes home April 2011! We miss her a lot!
Hi all, My name is Ray and I live in Cork witch is a city located in the South East corner of the Republic of Ireland, I live with Anne-Marie my partner of ten years, we have no kids.
I enjoy many sports and was prior to my DX involved with organizing local car racing events. I played rugby in my youth and love watching all kinds of sport. I also enjoy reading and traveling.
My mum past away after battling cancer at the age of 35 when I was 4 years old, My dad past away in 2000 due to a respiratory illness.
I am a recovering alcoholic and have been sober over 7 years.
Prior to becoming ill I worked as a Bricklayer.
I was DX last year with what the NS decries as “Split Notochord Syndrome” a congenital malformation of the spine. I have a variant of same called an Intradural Neurenteric Cyst at T1, a Syrinx at C7 to T3, fused vertebra at this level and DDD above and below this anomaly, he also said there is some herniation of the brain witch is minimal. He also (in a vague way) said there is “a nonspecific upper motor neuron problem”.
Due to problems with my vision I am unable to get on here as much as I would like as I feel many here have helped me in dealing with problems that arise from day to day due to my condition.
Hi. I'm Carrie and I live in Anchorage, Alaska. I've been here for 29 years. I'm originally from Wisconsin, where most of my family still lives. I'm a librarian, as is my husband. We've been together 10 years.
I joined this forum last year because my 34 year old DD was facing decompression surgery. She is married with a 12 year old son and 9 year old daughter. Her kids don't really remember a time when she was well and strong. In addition to Chiari, she has MS, but it's under control and the Chiari has been the worst of the two for her to deal with.
My DD had decompression surgery in July 2009 in Denver where my other DD lives. Dr. Oro did the surgery and changed all our lives for the better. I was privileged to go with her to Denver in May for her consultation, then in July along with my son-in-law for the surgery (he couldn't stay the whole time because of work), and back again in September for her post-op visit.
It's been so hard to see what she's gone through - pain, living in a body that is unreliable, missing out on so much with her kids and feeling guilty because she hasn't been able to be the mom she wants to be for them, so many disappointing dr appointments, and losing hope that things would ever get better.
After the consult. with Dr Oro, I cried tears of joy, because I was so afraid it would be another disappointment and I don't know where we would have turned then.
My DH stayed with our grandkids in July while we were all in Denver. My first husband died when my girls were very little, so my DH is the only grampa our grandkids have had. Even though he joined our lives when my girls were adults, they consider him Dad. He's willingly pitched in to help with anything anytime at the drop of a hat and we are all so lucky to have him. He's been the "kid wrangler" during so many appts or trips to the emergency room, but he sees it, not as a burden, but as an opportunity to spend extra time with them. And they adore him.
I don't get to visit this forum every day, but I check in as often as I can. I've learned a great deal from you all and greatly admire your courage, strength, compassion and willingness to share all that with others. It amazes me that you deal with so much and still manage to get through the day. Because of you, I have a better appreciation for what my DD's going through and I try hard to be the understanding supportive mom. And NOT say stupid stuff to her, like "Take some asprin for your headache." or "You're always tired. You need to get more sleep." :-)
My DD was initially disappointed that recovery was slower than she liked. [Sweetie, it's brain surgery!] But she's now "turned a corner" as she puts it. She still has some pain, but it's managable and she has been pain med-free for 6 weeks now. For the first time in so many years, her life isn't ruled by pain management and all the physical and emotional toll that takes. Honestly, it's bad enough when people have such pain, but treating them like junkies adds insult to injury.
My DD still has some neck issues to deal with and may have to have surgery for bone spurs. But she's going to PT regularly and getting stronger all the time. She's gained 20 lbs and looks healthy for the first time in many years. She has more energy to spend with her kids. And she's started driving again!
A few weeks ago my DH and I went to Hawaii for a much needed break. It was great to travel for non-medical reasons. :-)
I hold good thoughts every day that things will continue to improve. And every day I think of you all and wish you good health and freedom from pain and worries.
Big hugs from the Greatland,
Hi...So good to hear all the positives ....I am so glad ur DD has made it to that corner : )
And she is so lucky to have a advocate and mom like u to be to loving and caring, but more important, u took the time to understand.
I am so happy to hear this update as u and ur DD cross my mind every now and then too.....I pray her recovery continues to give her the pleasant corner to turn into.....
Thanks so much for sharing that story and helping us see the positive side of things. I am 3 months post op and still waiting to "turn that corner" though some days I feel like I am getting close! I, too, am working with PT to get stronger and am starting to see the results. You and your husband sound like terrific, supportive parents and your DD is very lucky to have you! I wish her and the family continued success in beating Chiari!
Hello, I'm Angela. I was just recently diagnosed with Chiari and now that I'm learning about it, so many questions have been answered. For half my life I just thought that I had more medical issues than other people and I never realized they were all linked. Just reading what you guys have written here brought tears to me eyes. I now have people to relate with, this makes me feel human again. It means so much.
I am married to an amazing man and have been married since 2007. He loves my children like they're his own even though he doesn't have kids himself. We stay busy with sports and my husbands band, he plays bass in a rock band. I have an 11 year old daughter, I had her when I was 19 so we have grown up together. She is often concerned about my neck pain, its very sweet and she is such a caring person. I also have a 7 year old son who has ADHD, but that doesn't change the fact that he is an absolute sweetheart. I haven't told my kids yet about the Chiari diagnosis. I don't want to scare them. I'm meeting with a Neuro surgeon just to talk and ask questions this coming week.
I look forward to getting to know everyone here and learning more about Chiari.
Hi and welcome to the Chiari forum Angela !
U r lucky to be fortunate enuff to find out about chiari b4 u have surgery...I feel the more educated we r on the condition helps us push for the right treatment and right dr !
I am glad u were able to benefit from our threads.
We r happy to welcome u into our little chiari family here, but sorry the reason u had to seek us out.