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Chiari Malformation Community
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Avatar universal

just dx with Chiari Malformation 1

Hi all, first I want to thank you for all the posts, questions, answers, testemonials, ect.  Just reading the information that's been posted has helped me understand better what I am dealing with.   I was dx on July 3, 2 days after my 43rd bday.  I've had so many health issues for so long and no one ever connected the dots until I asked about getting an mri done for Chiari.  A little background, my now 29 yr old niece had decompression surgery about 4 years ago.  She's had that horrible barking cough her whole life.  (So have I). Her mom, my sis, kept telling me I have Chiari too and I need to get checked, I just blew it off, till one day in May while looking up some health articles to send out to staff in a newsletter, Chiari Malformation shows up in the google search.  I start reading the symptoms and started crying at my desk because I hit every single symptom.  So off to the dr, get xray, comes back normal.  Ask for mri, she sends me to neuro.  I tell him about my niece and he says yep, that's what I was thinking.  MRI came back with a 7mm herniation.  My BF and 20 yr old daughter went to see NS (Kaiser - Fontana CA) Dr. Goldenberg and he is suggesting surgery based on my symptoms.  I've had clinical depression for 15 years (dx anyway) treated with meds for the last 8 years without interuption, RLS, tinitus, my vision has gotten worse, sleep apnea, I'm lucky if I sleep a full 4hours a night solidly, trouble swallowing, coughing with the most intense. makes you pass out headache, and now more prevelent in the last 6-12 months the shakes, almost like my Gpa that had parkinsons.  I can't stretch or laugh too hard without my head feeling like its going to implode and I have constant loss of bladder control ( even b4 I was pregnant at 22) and I am having progressively worse time speaking, getting tongue tied (is this related or stress related) and I have to talk a lot for my job!

Having seen my mom and sis go through this with my niece I am more afraid to tell them than I am of having the surgery.  Is that crazy?  I had finally got up enough nerve to tell them last Sunday family gathering, but my same niece had a seizure, so I didn't because I didn't want to add to their stress.  Did anyone else struggle to tell family?  Does anyone have family members that have Chiari?  They say its not hereditary, but I think otherwise.  

Ok, so I haven't really had anyone to talk to that understands this as much as you all here, so thank you for listening and any advice would be very much appreciative.  Sorry for running on and on....  :)

My BF is very supportive and we are committed to each other and he's been there for me trying to figure this all out over the 3 years we've been together.  I thank God every day that I have him to support me.
5 Responses
5640779 tn?1375813366
Hi Storm...
I can relate to much of what you said as I'm sure many here can. My daughter and I both have Chiari. She had her decompression surgery nine years ago, I have not had mine yet. I have other family members with related issues.... I agree this runs in families! I know how hard it is to hear this diagnosis. Like you, I'm grateful for the support we find in each other :-) Lisa
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Yes, I too can relate to much of what u said.....I also had the cough....mostly if I would laugh, i would start to gag and then cough...always ended with a nasty HA.

Depression is one of the side effects or symptoms of Chiari, so are seizures....some develop them b4 surgery some post op.

I agree with u in that I feel it is somehow passed thru families, I have a cousin with spina bifida.....Chiari is related to SB.

The thing is u said u r having surgery, but u did not say if a syrinx was ruled out, or if u have a CSF obstruction, or overcrowding, tethered cord, ehlers-danlos?

Are u on C-pap for ur sleep apnea?

Telling family, yes I had a difficult time in fact I waited until just b4 surgery to tell my parents....they are older with health issues and I did not want them stewing over this for too long, so to shorten the time they had to worry I didn't tell them....my sister knew....and I feel she has it too....she does not want to hear what I have to say, so for now I am quiet, but she has the same cough,.....and she has very elastic skin...so I feel she has EDS....and I feel her one son has Chiari, he has HA's and GI issues.....

Once u know u have been tested for ALL related issues and that surgery is ur best option, then u explain it all to ur family....they all know enuff to understand it with what all ur niece has been thru.....

I hope u invite her to join us here as knowing she is not alone can help even thru the recovery <3
Avatar universal
Selma and Lisa, thank you so much... and thank you for taking the time to read my rant...:).  I had my second MRI and xrays done last Friday, so I am waiting to hear about other issues and to see if there is a blockage.  Based on everything I've read I'll be surprised if I don't have CSF blockage, but trying to remain optimistic.    I had no idea tha GI issues were related to Chiari too!  Wow, makes since since I had what I called "morning sickness" for 12 years before being dx as ARD.  Throwing up acid everyday is the worst and I was told for so long that was what caused my cough!  OY.  

I was dx with SA IN 2007 and used the C-pap for about 4 months and tossed it.  Since i ve been with Kaiser, I've never been tested and I never said anything because I didn't know any better and I hated that darn thing.  Guess I need to talk to the dr about that and get a new one.  It would be nice to sleep again.  

I took my daughter with me to the ns to ask about her and if she should be checked and he said only if she starts to develop symptoms, that scares me more than anything else.  Should I force the issue with her PCP?

As soon as my family knows, I will ask my niece to join.  

Thank you again, so much.  Pam

620923 tn?1452915648
COMMUNITY LEADER

  No need to put ur DD thru this as the Dr said unless she shows symptoms and with u having it and ur niece u will be able to spot it or related issues and connect the dots faster for her.....

NO worries, know u r not alone and we are always here : )
Avatar universal
Thank you Selma, that makes sense and does make me feel better.  My girl is just a daredevil and does it all....  but you're right, no need to worry about somthing that isn't there.  
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