Just Needing to Vent

[tattie197635]

I don't know what else to do and just need to vent......I am so tired of going through all of this....I am a mother of three and need to work...I tried to go back to work and my body just won't let me......I have extreme tingling through-out my body...like some sort of nerve damage along with fullness in my ears at times.....I have pain in the back of my neck and it hurts to bend over......I just heard from my insurance co. today and they said it may take another week to hear from them to see if they'll let me go out of network.

Oh and not to mention my memory is very cloudy it seems that I don't remember much at all....even my kids told me it's getting bad...I just want to cry because all I want to do is get in to a specialist and insurance at times makes that impossible.......I am scared that my Chiari is acting up again, but this time I'm getting symptoms that I didn't have before......What % of people have to have a second surgery to correct symptoms again?....I'm so SCARED!...

It just makes me feel good that theres other Chiarians that understand what I'm going through...Please Pray For Me!

[linnielou232]

It has to be so hard to have Chairi and having little ones at home.  I have 2 kid's, but they are now grown and they were so helpful at my time of surgeries.  I wish you the best and it is flustraing and hard to understand what we all go through.  We have been where you are at right now and it will get better.  Best wishes.
Linda :)

[deadmemory]

Hello Tattie <3

I am very sorry to hear everything you're going through. I am a little over 1 month post op and realize I am still healing and I don't regret for a second having had this surgery. I felt great the first week and a half then began to feel terrible. I found out I have a pseudomeningocele. I know it is the most common complication of this surgery.. I have a 16 month old DD. I know how hard it is.. she looks at me like "why don't you pick me up, mommy" she points at me and cries "mom mom mom" it hurts my heart to see her so upset. My insurance is very picky about what they're willing to pay for and I thank God that they paid for my surgery. It is rediculous how many hurdles we need to jump through to get the care we need. As Selma said, there really isn't any percentages but there are a lot of reasons why people need a second (sometimes third or more) surgery. I believe that I am forming some scar tissue in the surgical site because I have a hard time exercising my neck muscles.. it feels like someone is on the inside of my incision tugging away. Ouch! I have had 2 other surgeries (abdominal) and have formed scar tissue.. I wonder what if any medical condition causes that.. (sorry I am thinking aloud)
I will definately send some prayers your way! And please let us know how you're doing.

Your chiarian friend,
Krystal

[irislita]

I definefly understand u.i dont have children and i admire chiari mothers.i could not even take proper care of a dog right now.it is so hard to go through all of that...plus having had surgery and not feeling better.i am post op,but i have so much pain and this fullness of the ears...omg...my legs feel like i went working plus dancing 10hours.i dont feel like working neither.i get brain fog and sometimes even wonder how conversations get out of my mouth while my brain is still in the first sentence.i have tingeling and strange feelings too.i can only tell u to go to a specialist.i will do so too...i know its tiring doctors telling u everything looks fine,but u know its not...u can always vent as we all understand u...none of us did choose this hoyrney,but we are here for each other.u r in my thoughts

[Rylanesmom]

Praying for you.  I don't have answers yet I know how desperate I felt working.  I am on loa as I am only 4 weeks post op.  

[selmaS]

  Hi...I know what u r going thru and I know how stressful it is ....and to try and answer u....I am not sure there were ne studies done to know how many needed to have a 2nd surgery and of those why they had to have a 2nd surgery.....in addition to possibly not having a well experienced Dr, it could be that they did not know about other under lying conditions...plus, there is no way to know how ur body may respond to the surgery or meds until u try....and sometimes it is just that, the way our bodies respond to it all that a 2nd surgery is needed.

  So, I really can't give u a %....

I know u r scared, and the more stressed u r the worse ur symptoms can get....they do cycle and it is possible to get new symptoms but u have to try to relax  and get this straightened out with the ins comp.

  Hang in there : )