"I still live with horrible symptoms"

I still live with horrible symptoms and have kept going to doctors since my operation in 2010.  The trouble is that I got the impression that each person I went to see knew very well what I was living with and had no intention of helping me or letting the problem come to light.  I felt alone abandoned and betrayed by a system I was supposed to trust and confused that it could actually happen and there was nothing I could do but suffer.

I had been under ENT care at Raigmore hospital Inverness and with various GPs at my Medical Practice. 

 

I had not been seen at the hospital since after my first appointment and a follow up, but I believe the GPs were instructed throughout and offered me a scan within the last three years.  I felt the hospital did anything and everything to get rid of me.  GPs repeated to me that I was not to get any more surgery on the hospital’s say so with my problem while I was still trying to ascertain what the problem was.  Now that I have managed to get to the truth by my own means I found how I was treated to be pretty horrific.

 

I felt that the GPs continued to refuse to treat me. I felt that they would tick boxes by going through the motion of sorting out a referral to a doctor in London and a doctor in Glasgow but I felt that these were token appointments and only used to discourage me from thinking anything was wrong as a result of my surgery and the story was always that I had a problem as a result of filler and a lymphatic problem.  The truth is much worse. 

 

One GP in an appointment asked what my next move was which I found shocking.  I was in pain and in need of medical attention for something undiagnosed for years. 

 

In an appointment with the GP, I was asked what made me think I had an implant.  I had a surgical note which stated Implants and Instruments, I felt that they didn't want to look.

I felt I was never told what was being treated that way and why.

 

Another GP appeared helpful but I felt led me on a wild goose chase.  I spent money being referred to London.  Raigmore took the opportunity to tell me they required photos so he could see.  They got the photos, I went to London and he did not do anything to help.  He pointed to where I have facial damage and talked about ageing and I had to stop him and say that I didn’t feel he was really going to help me and I feel that he didn’t.  He talked to me about filler.  The same story which each person came out with and with very little consultation. 

Another doctor dealt with maxillofacial problems yet with me he talked about nose and fillers, I told him I was there to discuss my cheek area and damage to it and not what I felt he again had leapt to very quickly without consultation and not his area of expertise.  My GP had again done a referral which led nowhere.   

I feel there is a distinct pattern to it all. 

Within the last year my cheek area felt especially horrendous and I could hardly speak properly.  I even talked to the police to ask if withholding information about items used during an operation was an offence.  They suggested suing under freedom of information.  When they asked what was wrong with me I could not explain at the time as I had no information.  

After that I decided to go abroad to get another private scan to check if what a scan there in 2012 had revealed was still visible.  Technology had improved.  I didn't check the disc for a few months and thought it was similar to the paper copy but it was considerably more revealing.

I have some sort of medical device cheek to cheek, or it was.  And staples at the side of my nose.  None of which anyone has talked about.  I don't even think it is used in nose surgery.  It is all consistent with the change in shape to my face/head and the pain from this surgery.  I have not had any other invasive surgery and it is all from my original operation.  I repeatedly requested from the hospital who did my original operation what was used and where.  Everyone ignored me. 

I went back to my GP and said there was wire, I took a photo of it and they did not look at it.  I felt they showed no surprise or concern and simply asked how did I want to handle this given that my experience locally has not been good. I replied I didn't know.   This is a mess and it's not my job or area of expertise sorting something like this out.  A lot of it can't be fixed now, it's permanent. 

The stress of having such things in your head is bad.  With physical activity my face hurts, it's difficult to breathe and my stomach swells.  It's a pattern I have come to know and learn to work around.  The stress from feeling backed into a corner by medical professionals like this is beyond anything a patient should ever have to live with.   I feel that there has been a deliberate attempt to not take any responsibility and remove liability from the NHS at the expense of my health and my head which is unrecognisable.  Psychologically it's like a death.  You grieve for your old face.  And I feel constantly beaten down by doctors.

I have been talking constantly about how bad my condition is for nearly 8 years and I feel that the people whose job it is are not doing what they are paid to do which is to ensure something like this is not happening.  It's been completely devastating.

I’m sorry my story is long but I feel it is a very sad testimony to the state of things and if it can highlight the problems so that it's safer in future for others then some good will come of it.