"My husband's story"

My husband was first diagnosed with a benign brain tumour after suffering a large tonic clonic seizure which resulted in him being hospitalised for a couple of days.  From this point he was classed as epileptic.  This was managed by anti-seizure medication and monitored by having regular MRI scans. 

Despite having many absence and occasional tonic clonic seizures since then, he has managed to work and lead a relatively normal life.

The brain tumour is a bi-frontal frontal dermoid cyst. After a recent CT and MRI scan in August 2017, the tumour was found to have increased   Despite initially having regular scans, there had been a significant lapse in the time since the last one, and this growth was only spotted after he suffered two tonic clonic seizures back to back in August

My husband has been having headaches on a daily basis since January 2017, and suffering occasional absence seizures on the lead up to the two seizures that happened on the same day in August.

Since that day his condition has worsened.  This has resulted in a wide range of symptoms that are having a big impact on his, and our lives.

He is under the Department of Neurology, Queens Hospital, Burton upon Trent.

We recently received a letter from Queens Hospital in Nottingham to see a neurosurgeon. When we attended the meeting the neurosurgeon told us they had know idea why they were seeing us, and that they had not been updated by Burton Hospital with knowledge or a copy of the most recent MRI scan. They told us that given what they could see from the CT scan, they would not be willing to operate as the risks far outweighed any potential benefits, and they seemed quite angered that we had been referred to them by 'somebody with no knowledge of surgical procedures and practices.'  This was extremely frustrating for us as we had travelled all the way to Nottingham for nothing, something that was made even worse by the fact that after having a seizure my husband had to surrender his driving licence, and as such we had no way of getting there independently.

I called my husband's neuro consultant at Burton Hospital the day after this appointment to try to discover what is supposed to be happening now.  I was told that they will call me back.

I am feeling at a complete loss with regards to what to do. My husband isn't working, and both he and I believe he isn't able to. We have a child with me being the only person working and effectively looking after everybody.

Please help.