I was admitted into the hospital on May 29th due to pressure headaches and extreme pain. They did several blood tests and X-rays and CT scans and then decided to do an LP to check the pressure in my head because my shunt was at 120 even though my doctor had set it at 100. They tried to dial it back to 100 but it didn’t work. When they did LP my pressure was at 230 and climbing, so on June 4th my NS decided to put in a LP shunt and leave the VP shunt because there was very little fluid so he thinks it is draining the fluid but not dealing with the pressure. I had my surgery on the morning of the 4th and once again went through hell with my NS refusing to put me on IV meds. Finally after three hours of screaming in pain the nurse practitioner order a pain pump and they let me have the pain pump for two days. Also while I was in the hospital I contracted E. coli so I was also getting treated for that. I got to come home yesterday but I’m still having pressure headaches plus the pain of getting my back and stomach cut into. I am suppose to schedule an appointment this week with my NS so that he can set my shunt and make sure it is working since he didn’t do that before he sent me home from the hospital. I’m sorry for all of my negative posts lately but I feel like I’m getting cut into just for the heck of it. I am still waiting for Medicaid so I can get a new NS. I appreciate all the prayers and well wishes!!
It is really hard for me to ask for help, but this week I should be getting a home health nurse. It would be nice to meet some people that are in Fort Worth that I could connect with in person. So many times I feel all alone and I’m starting to feel like a prisoner in my own home because my car died so I had to sell it to a junk yard to get money for bills. I would just like to be able to talk to someone either in person or over the phone. Depression is starting to set in big time
Sorry, Amy. Hopefully you are on the upswing. Hugs, prayers and all sorts of good thoughts headed your way.
Amy, Know matter how you put it - this situation you're in sucks.
As Abby said; you are not being negative - you just sharing what's happened to you. This is exactly what "ChiariSupport.org" is for. We are here for support of ourselves and each other.
I'm sorry that all this happened to you. We understand that sometimes, it does feel like we just can't take much more and miss our old lives. It's hard not to get depressed at times. What we all deal with, within our own bodies, everyday is a lot. Then on top of all that, you ended up in the hospital - It Does Suck!!
I hope that Medicaid comes soon and you can get some different help. It's important to have a NS that you are comfortable with. Prayers have been sent up!
I found out today I was denied for Medicaid so now I have to reapply and go through the whole horrible process again
I'm so sorry Amy! It sounds like you've been through too much lately. You are in my thoughts and prayers!
Amy, still keeping the prayers coming. I hope and pray the lumbar shunt brings the relief soon. I’m so sorry you are going through this. You are a fighter and I believe you will get to where you need to be.