Hello everyone I am a Chiari Malformation warrior post op three years. I’m currently an undergraduate at Bridgewater State University majoring in communication sciences and disorders. In my program I have the awesome opportunity to participate in undergrad research. I decided I wanted to learn more about Chiari Malformation and the effects on language and speech production. I’m reaching out to this chat group to see if anyone would be interested in participating me in this research. The ages I’m targeting are 21-30, who have already received decompression surgery. I would like to assure the participants identities would be kept confidential. Also I am willing to do a face to face or a FaceTime interview. The interview would only be 6 question. Please contact me either through the website our ■■■■■■■■■■■■■■■■■■■■■■■■■■ if you are willing to aid me! Thank you so much for taking the time to read this and hopefully for the help!
I would love to but I am out of your age range. Good luck in your recruitment efforts.
I have not had the decompression surgery. I have now been admitted to the ER twice where they called a full blown stroke code. Most recently was last week. My neurologist made me go bc I was “talking funny” on the phone and his office would have closed before I could get there. (& I do believe he thought I was in danger or he wouldn’t have sent me) I knew I was not having a stroke as the speech episodes have happened a few times in the last year. I think after radiating my brain, again, with yet another CT scan to find out nothing was wrong and I was indeed NOT having a stroke like I said I wasn’t they blamed it on pressure on the brain stem from chiari and let me go.
At the time I was very angry. 30 years old and I missed half a day, scared my 5 year old, REALLY SCARED my family. I knew it wasn’t a stroke, just a stroke of bad luck. Later I realized I should just be thankful that I have practionioners, friends and family around me who care enough to pick up the pieces if anything catastrophic were to happen.
Good luck finding your research group! & thank you for picking something that is so personal to you but may not be so easy to write about. The more we learn the more the “us” of the future benefits!!
I am so sorry to hear that. I hope you get better and stop having those sever symptoms. Thank you so much for reaching out to me and letting me know about your symptoms it is a very interesting find to think a compression of the cerebellum could cause stroke like symptoms mainly in speech. If I am able to continue my research through graduate school I would definitely add stroke like symptoms to my participants group. I wish you the best of luck!
Hey Gabby,
I reached out to my advisor on my research and she informed I could extend my age group, would you still like to participate? If so would you mind reaching out to my email ■■■■■■■■■■■■■■■■■■■■■■■■■■■ Thank you for the response!
Hello there I did have slurred speech before having my decompression surgery they also thought I was having a stroke at that time because I was at the hospital now even two years after the first surgery and the second one for a psuedomingle I sometimes still have slurred speech
Hello, Thank you for the response, would you mind answering a few survey questions for me? If you wouldn’t mind could you email me at ■■■■■■■■■■■■■■■■■■■■■■■■■■■ If not thank you for responding to my question? It truly amazes me how a compression of the cerebellum can cause so many difficulties.
Nicole Litton
that is interesting about them thinking it is a stroke–I have had that a couple of times the last 15 years where I call my doctors nurse about a flare up and describe my symptoms and they freaked out. in 2004 they ordered a head mri because of it and this year they told me to go to ER before it was too late…I didn’t go because I knew it wasnt a stroke—I have been dealing with it for years. but it dawned on me that really puts it in perspective…to them it sounds like an emergency situation… my reality has been that after numerous and various medical evaluations the last 27 years I can’t see that they have a good handle on what to do for these sort of cervical spine and chiari related issues.
My speech and language have been since my surgery.But im older than your age range.My surgery was in 2003.
The symptoms for compromised communication is very much the same for the age group of 20-30, as it is for older patients. And, I’ve been told that in adults, Chiari symptoms notoriously do NOT show up until around 40yrs or older. And for me, communication and comprehension was vastly compromised before decompression surgery. I could barely understand what was ever said to me the four years before my surgery - much less able to respond. That gradually changed post surgery.
Hello Beth,
I am so sorry for getting back to you so late I was in the process of extending my deadline for my research. I was wondering if you are conducting your own research, asking for advice or will to participate in mine. Any ways best of luck to you Beth and I hope you find you answers!
Thank you
Nicole
Hello, Beth
How are you doing?
I hope all is well, I was wondering If you would not mind filling out a quick survey regrading your symptoms pre and post surgery. If you are unable would you mind sending a quick email just letting me know. I will attach the questionnaire. Hope all is well,
Best regards
Nicole
Hey, Nicole!
I would not mind at all filling out a survey. Send it my way!
BethR
Thank you so much Beth! Have a great day!
Nicole
Hi, i am also outside of your target group (37 yrs) but i did have anomic aphasia for several years befor my diagnosis. I will participate if it will help.