"Angry and frustrated"

The whole experienced has had a massive impact on my confidence and has made me think that I cannot go out on my own. I am incredibly angry because I deserve to be treated better and I am also immensely frustrated because I can no longer do the things I used to do. I am scared that I am never going to able to cope and do things independently, even small things like walk to the shop or catch a bus. It has made me feel like I don’t matter, like I am insignificant and not important enough to be respected.

I had a horrific experience with the MRI which terrified me and left me scared to have more. The situation was handled very badly by the staff at the time and my surgeon was told that I had missed the appointment.

The nurses were excellent and have been great throughout the whole experience.

Unfortunately the doctor had no people skills at all. I have a lot of respect for their skills, but don't feel they have respect for the people involved. The doctor seemed to have a messiah complex and I didn’t feel they were honest with me. All I got were hidden facts. For example, I wasn't told that the sack around my brain had been nicked and its not written in any notes. This was one of the major risks of the surgery and caused me to contract meningitis and return to hospital and stay for nearly 2 weeks. I also wasn't told that I had 7 stitches in my stomach where fat had been taken to plug a hole. The doctor was very matter-of-fact before the operation and just bluntly listed the risks and stated without any empathy or emotion that I could die. I feel like i did something wrong and it has made me feel it was my mistakes and not the doctor's that led to the complications. I am scared of ever going back to see the doctor and never want to see them again

I feel that my condition has been made much worse due to a lack of post-operative support. There was supposed to be follow-ups 2 weeks after the operation and instead this took 14 months. I then only finally got access to rehab through my GP, when this should have been organised through the hospital.

When I finally received follow-up, the ENT doctor said my throat was healing nicely but it wasn’t. Yet a CT scan of my throat by a different hospital 2 years on has said its still swollen and it still has a hole which would need plastic surgery to fix. This means I am on a very restricted diet and choke on my food.

Whenever I have to have an MRI I never receive and feedback or follow-up get no response when I chase it up. The rehab doctor has advised me to just keep on at the doctor’s secretary.

I am incredibly angry about the whole thing and feel that there is no outlet for this anger. It has caused problems between me and my husband who is also holding onto a lot of anger and struggles to hold back in meetings, this cases arguments between us.

The entire experience has made me feel completely useless and a real burden because I haven’t got over it as quickly as i should. I know this is because I haven’t had the help and support that I should of had straight afterwards, but that doesn’t make me feel any better.

This leads me to feel so frustrated and annoyed at everyone, most of all myself because I feel I should be able to do things again. I also feel that the medical people now expect me to be better than i am and expect me to do things on my own that I can’t. This then makes me feel even worse. For example, the physio team made me go walking on my own, without understanding that I cannot physically turn my head or look down to see pavements and other hazards. Because of this I went out on my own, walked into a curb I couldn’t see and fell over which knocked all of my confidence out of me.

I am terrified that I will stay like this forever.

I would absolutely love to be able to go back to work, but while I am unable to walk independently I am unable to as there are too many health and safety issues.