In the hospital

I went to the county hospital Thursday morning and they did a CT and X-ray an said my shunt was collapsed on one side and bulging on the other, so they transferred me to the hospital that my neurosurgeon gas privileges at. I got to the next hospital and was admitted and my NS informed me that the other NS didn’t know what he was talking about and that my shunt is working properly but they need to do an LP on Monday to test my pressure. Then today out of the blue they put me on IV meds and said it was a precaution because there might be swelling on my brain. I asked to speak to the hospitalist and I asked him about EDS and I got the deer in the headlights look, it was great and my NS is too worried about proving that he is right and I am wrong and there is nothing wrong with me. I’m so over this

Amy, I am worried about you. Regardless of which one is right or wrong I am glad you are in the hospital. How is the pain level? Are they treating the pain? I think you need to get a copy of the CT and xray reports so you can read, with own eyes, what the radiologist has reported. You also need the post shunt operation imaging reports to compare. Have you been told what your pressures were from the LP?


My pain level is a little better but my doctor took me off all IV meds so I’m taking the same thing I take at home by PO.i have a copy f the first scam but nothing else. They are doing the LP tomorrow so I will keep you updated on what the pressure is.

I am saying some prayers for you tonight, for your health, your spirit, and your strength. You are a very strong lady, we know this about you, and Amy I hope you know this too. Know you are not alone and we are all pulling for you.

Hugs, jenn

Amy, I'm sorry you are caught in the middle of all this. I'll keep you in my thoughts and prayers. I too am glad you are in the hospital in case something else comes up. Keep us up to date when you can, please and thank you.

Just got back from the LP and now I am in isolation and all they will tell me is that I have a bacterial virus and my doctor will explain

I am so sorry you are going through this. You have been on a rocky road for sure. I am still praying for you. Please try to rest as much as you can and I will continue the prayers and positive thoughts.