Follow Ups

[Sk8inpancake]

Hi All,

After being in hospital for a month including two ICU trips, I have been to hospital a number of times since discharge. Due to the swelling around my head internal and external, another CT scan was completed this week. It continues to show a mass in my head that keeps refilling with fluid. I'm now waiting an urgent MRI of the head and neck. I've had 4 surgeries previously that didn't help so they are saying no to more until they know the cause. Has anyone ever been in a situation like this before? I'm a little lost and I just want some answers. I know I have to be patient but I hate living with the unknown. I'm quite scared.

I've been asked to go back to hospital on Sunday morning for more steroids for the swelling and to see my consultant. What type of questions should I be asking him? Also I need some advise on how to "chill out" and stop overthinking!

Thanks All.

[Sepsur]

I’m sorry I haven’t got any idea about your condition, I hope you get some answers soon and a programme of treatment. The only question I can think to ask is “Where do we go from here?”

Good luck

[downthemoor]

I think you have every right to be frightened as only a month ago you were posting about returning to the gym ! It's very scary post critical illness and ICU ..I found sending for my notes very useful ...was also useful for the consultants I saw after as they didn't have access to these as was in a different authority . In my case next time I see my cardiologist the conversation will be very different now I have these notes as there are pages of heart issues in them that he wasn't aware of. I will take the notes with me and highlight the cardio parts. So much goes on without people reading the history. Every day in ICU I was seen by different people who didn't know the history and even if they read the notes they were inaccurate to say the least. Even meeting the nurse who cared for me on a follow up visit to ICU I found she had my history totally wrong and thought I'd come in from a ward not by 999 call involving 2 ambulances and air ambulance. Every time I've been back to A& E I've been told they treat you as presented that moment and don't look at history.

This might not apply to you as you might have been under the same consultant throughout. So apologise if not relevant!

But never apologise for asking questions and telling them straight that you need to know exactly what to expect and what they think is going on and what they plan!

[Sk8inpancake in reply to downthemoor]

Hi,Thanks for the advice. I have been thinking of requesting my medical notes, as I don't think they always tell you everything. I'm very fortunate that I'm under the same consultant who has been through most of my results with me. I've wrote a list of questions to ask tomorrow and hopefully we can start to get somewhere. I will try putting my game face on and asking direct questions. I've got to the point of saying I don't care what we try next.

Thanks for reading!

[downthemoor]

Good luck! Seeing my notes was a game changer for me ..only if to explain why I have been so ill post ICU and stop the feeling of why do I feel so ill when everyone tells me how well I look compared to when I was discharged!

[Sk8inpancake]

Hi All,

I've had a bit of an update. Last week I had to have a biopsy as my facial muscles have thickened and are swollen. They have also that the fluid which they think is infection has moved to my cheek and my jaw bone is showing signs of swelling. They were unable to get a sample of the fluid but took 3 tissue samples. This was done last week on Thursday and I am waiting on a phone call from my consultant. Does anyone know how long it takes for results? I'm still at that impatient stage of where I really want answers but waiting for the phone call is tortuous! I really want to put my Christmas tree up but I am really not in the mood. I'm worried I will end up in hospital again, I'm being consumed by my health fears again and the unknown.

Thanks for reading all.