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Midwestern Chiarians

The purpose of this group is for people in the midwestern states to come together and share information in our general locale.

Members: 47
Latest Activity: Jun 18

Discussion Forum

New Neuroscience Institute

Started by Katrina S.. Last reply by mlubbers May 27, 2012. 1 Reply

Hello All!I know not all of you are from Ohio, but I wanted to share this for those Ohio folks or others that may be looking for a new place to try to get treatment for their Chiari…Continue

Tags: facilities, treatment, doctors

Follow-up MRI questions

Started by Loretta. Last reply by teamlasota Mar 31, 2012. 3 Replies

Hi all it's Loretta here, just thought I'd see how this little group works.This might get long winded so I am apologizing up front...Here Goes!  I have finally convinced my PCP that I should probably…Continue

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Comment by Tiffany Sees on June 18, 2014 at 6:54pm
I am from SW Missouri
Comment by GerryKBeloit on March 16, 2014 at 12:28pm

Hi Everyone. I am from Beloit Wis and was recently diagnosed with Chiari 1 and I am currently seeing a NS at the UW Hospital in Madison. I had a fall that caused a head injury back in 2010 and ever since my Chiari symptoms are working over time. At the moment I am almost unable to anything due to severe head/neck aches dizziness and seizure like blackout spells.

Comment by Tiffany on February 9, 2014 at 2:34pm
Hi all. I'm mom to a newly diagnosed 7 year old (21mm herniation) Still navigating the waters of Chiari. We live in central Indiana and curious what surgeons Midwesterners have had good luck with.

We have seen one who doesn't specialize in pediatrics, so we are seeking additional opinions. She is scheduled to see Dr Firm at U of Chicago this month.

Any other parents out there?
Comment by DC on November 11, 2013 at 9:59am

Hello folks, I'm from CHICAGO and have been looking for a group/individual to relate to in my city. I got my decompression surgery a little over a year ago and still am symptomatic (headaches, shooting pains, vertigo...) So glad I finally worked up the courage to join a website with people who understand what I go through, have kind of been living in a bubble..im sure some of you could understand. Do you feel people starting at your scar?

 

Comment by razzle51 on March 27, 2013 at 8:36am

I am in Iowa . first make sure your dr knows about chiari, thats no.1.....Like I tell everyone else asking this question if it is making your quality of life not good then yes I would do it as it did in my case ... I couldnt function , couldnt work etc etc..

Comment by Statuszero on March 27, 2013 at 6:07am

Hey everyone, I am new to this group and wanted to meet some people who also have Chiari. I am currently discussing decompression surgery with my neurosurgeon and just I just don't know if it is worth it. Hit me up if you have an advice or just want to talk.

Comment by Elsie Nash on March 11, 2013 at 4:38pm

Hi all, I'm 18 and about 8 months post op and still having many problems with my recovery... I'm from Illinois and looking to connect with people in my area!

Comment by EmAwig on January 15, 2013 at 6:02pm
Hello I am new and from Minnesota I haven't met anyone else who is, so feel free to message me as I am very open to talk! I just had decompression surgery and almost 4 weeks post op doing well but still resting and recovery. My neurosurgeon did amazing and I am so happy that I am doing well.
Comment by Puggles on October 8, 2012 at 5:22pm
Hi my name is Barb I live in WI. I was diagnosed in 1984, and was always told that it was "vo big deal, that's just how I was made". I've always had some symptoms but they really escalated after a head injury in 2001. I was working at the time so my work comp. dr.'s always said that they were not related. I was called a faker, drug seeker and told that I needed a psyc eval. When I severed ties with work I finally was referred to a ns for decompression surgery in 2006. Befor surgery I was wheelchair bound. After I made a dramatic recovery, I even returned to work.i was told by my ns that I was "cured" and would not need any follow up care.
I moved to WI in 2008 and fell down a flight of stairs at my place of employment. Since then I was diagnosed with another TBI and post concussive syndrome. My PCP is great and trying to educate himself about chiari. I see a nl for my seizures and Botox inj. For migrains and dystonia.
I have developed severe pain between my shoulder blades, neck pain and increased headaches (not migraines just pressure , like before surgery, it's getting intolerable. I am unable to sleep. My heart rate increases when I change positions and I get dizzy when I stand or bend over and get pounding in my ears. I have told my PCP and he ordered a ct scan of my head only (I can't have an MRI because of a spinal cord stimulator that was implanted due to a failed c5-6 disk fusion in 1995). I asked the dr. If we could do a ct of my back and neck to chech the syrinx that I had before but he said that was not necessary the head ct would let us know how things are with the cm. I had asked to be referred to the wi chiari center and he also said that it was not necessary. What should I do? The pain and dizziness is getting so bad I can't drive.
Thank you in advance for any advise.
Comment by Loretta on August 15, 2012 at 6:46am
Hi all, I am really struggling with not only the Chiari but also fibrous and especially arthritis. I have had surgery in both knees allong with injections of cortisone e84. I don't know whatñ)9
 
 
 

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